Last Saturday, right before a snow storm was hitting Colorado, we organized our first Mito Family Day this year.

Our family days have grown in size over the last year. We have families who attend every single time, and we always have a couple of new families who have found us. We are always excited to see both old and new friends.

Dr. Ellen Elias, Director of Special Care Clinic, took time out of her busy Saturday to talk about day-to-day management of Mitochondrial disease, and how Special Care Clinic at Children’s Hospital can provide support in managing our Mito kids.

As Dr. Elias spoke to our parents, our children had a blast!

Our kids rocked out with music therapist Lisa Townsend in and out of the ball pit!

Our kids got to paint pottery!

And play outside…

The day passed by very quickly! Our kids never really want to leave. Our parents want to stay and chat and share information. One mom said that she never did well with support groups because she always had the “sickest” child in the group. With Miracles for Mito, she and her family have found a home.

We also have a great core group of board members and nurse friends who always come out and play with our kids, and make these events possible.

And lastly thanks to our Mito families who came out to spend the day with us. We all know it is not always easy to get everyone out of the house on a Saturday morning!

We’re hoping to see you all at our picnic in June!

Thanks, Maria.

President, Miracles for Mito

Mom of 7-year old Jacob living with mitochondrial disease , www.momentswithjacob.blogspot.com

I have cheered on my friend Heather as she has been riding her bike for her daughter Samantha, and later in the memory of her. I have watched how important it is to her to ride for Children’s Hospital, the place that made it possible for her daughter to live.  Last year, her Courage Classic Team just took off! They became one of the top riding team for Children’s Hospital. When a team raises over $50,000, they get to decide where the money will be allocated within the hospital. Summits for Samantha directly benefited the Mitochondrial Clinic and its’ patients. Heather and her team is quite the fundraising machine!

So, what has been my excuse for not riding? The unpredictability of Jacob’s day-to-day life. The feeling of never knowing when we will be thrown into a long hospital stay where everything of normalcy will be thrown to the wayside. The day-to-day busyness of simply taking care of my children, and all the other things in my life. Just the thought of finding time for a bike ride seemed impossible. The fact that I am truly scared of road biking is not to be forgotten. The fear of falling off the bike or having someone crash in to me and my bike is real.

Don’t take me wrong. I have been riding a bike on roads since I was a little kid. That’s how I transported myself as a kid back home. There were no parents driving me wherever I had to be. I jumped on my bike to get to the train station, to go to the store, and to get to my friend’s house. 

155 miles of biking over the course of 3 days in the Rocky Mountains is another story, especially when you don’t even have a bike, or a helmet for that matter. And did I mention no experience of road biking or training for something of this caliber?

But I do have a heart. I have a healthy heart that is beating for my boy Jacob. I will ride for the hospital, which makes Jacob’s life possible. I will ride for the hospital, which has saved his life several times. I will ride for the Mito Clinic, which figured out the mystery of Jacob’s mitochondrial disease. I will ride for the doctors who have become an integral part of our lives. I will ride in memory of Samantha. I will ride for all the hospital kids, who I have been honored to get to know. And I will ride for Jacob. Jacob who fights for his life every day, I will ride for him.

 
Will you join us?
http://www.couragetours.com/2013/team/sfs
Sincerely,
Maria Hopfgarten
President, Miracles for Mito
Mother of 7-year old Jacob living with Mitochondrial Disease, www.momentswithjacob.blogspot.com

November is Epilepsy Awareness Month.  Many of our Mito friends struggle with epilepsy. The brain is often one of the major organs involved in Mitochondrial Disease. Many of the most well-known Mitochondrial doctors in the country are neurologists. There are more people living with Epilepsy than cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. About 50,000 die from epilepsy each year in the US compared to 40,000 in breast cancer.

I first met epilepsy when my mom struggled with malignant melanoma. At the end of her life, her cancer had spread to her brain, and she suffered grand mal seizures. Her whole body was shaking, and it was very disturbing to watch my mom struggle with epilepsy. I remember feeling very helpless, scared, and out of control.

When Jacob just had turned 1 year old, it was time to once again say hello to seizures. Jacob had a scheduled sleep study at the hospital. Jacob was not agreeing with the sleep study in one bit! I am not sure if he actually ever fell asleep that night. He was very uncomfortable, and as we moved into the morning hours, I was pretty sure that when Jacob’s eyes started to glare off, he was seizing. When the nurse came in in the morning, she told us that rather than going home, we were going to be admitted.

That was the start of our journey with epilepsy. I remember feeling as if my life had come to a standstill. I remember emailing one of Jacob’s case managers that I now would have to quit my work, since I would now be monitoring Jacob for seizures every second of the day. I recall her telling me to not make any drastic decisions, but first see how Jacob would be doing after being put on seizure medications.

It took us a while to get Jacob’s seizures under control. That first year of seizures we had to call 911 many times. Jacob stopped breathing with his seizures, and needed immediate medical care. We learned to live in the unknown, never knowing when the next seizure would strike.

I also remember clearly when Jacob went into status epilepticus (a seizure lasting more than 5 minutes) for the first time. I remember waking up from his rhythmic legs against my back, knowing that he had a full blown grand mal seizure. I remember arguing with the 911 call dispatcher that I had to hang up the phone, since I was naked, and I needed to get dressed before the whole ambulance crew would enter my house. Seeing your child seizing for hours is heart-breaking and exhausting. This Saturday morning was also the first time Jacob needed the ICU. This weekend, we started to realize that Jacob was going to battle the seizure monster for years to come.

Three years ago, Jacob’s seizures took a turn for the worse. Jacob went into status epilepticus, and never got completely out of it. He was actively seizing for 11 days without a break…After trying every possible medication including a continuous Versed drip, we were told that Jacob’s best option was a Pentobarb coma. This means that you put Jacob’s brain to sleep with heavy medication, which should stop the seizures. I will never forget how his metabolic doctor described it: “It is as if you shut off your computer, and then turn it on again”. To put our child in a coma was a scary decision for us. Jacob needed a breathing tube to breathe for him, and there were many risks involved with the coma including Jacob’s life. Jacob handled the Pentobarb coma with grace. The sad part was that Jacob’s seizures lessened with the coma, but it didn’t stop his seizures. Jacob was diagnosed with ESES at the time, since he had subclinical seizures continuously. His brain is buzzing around the clock. After the not successful pentobarb coma, hospice was on the table. The doctors on his team, who so dearly care for him, were sure that Jacob would not survive the winter. They were sure his seizures would kill him.

Spring came around, and Jacob’s seizures stabilized. A year later, we had a couple of months of insane seizures. Jacob went in and out of status epilepticus every day. We were in and out of the hospital, and again feared for Jacob’s life.

We then had two really good years of seizure control. We had given up on getting Jacob to a complete seizure free place, and instead have moved our focus to clinical seizures. We were very happy with where Jacob was in his life. We had been able to cut his seizure medication in half, and in return we got an alert, happy boy. Life was good.

This fall, seizures came back in full force once again. Each time, Jacob’s seizures get out of control, we have fewer options. We know what we have tried, and what hasn’t worked. We are still in the hospital today trying to get Jacob’s seizures to a better place. We are at this point trying a non-FDA approved drug to see if that can possibly be the miracle drug we’re so desperately are looking for.

On Friday we had a care conference about Jacob’s plan of care and his colitis. Jacob’s neurologist summoned it up well: “this is the family that has seen any possible seizures, who treats status epilepticus at home multiple times a day, but excessive diarrhea is something new”.

And this is the truth. We have come a long way from the time I was ready to quit my job over Jacob’s seizures to where we are today. We can spot a seizure from far away…We know all the signs. We know dosage of seizure medication by mg/kg that no parent should know. We know how your life can be taken over by seizures. We know that they are life-threatening, and might very well be the cause of death for Jacob one day. But we have also learned how to live with seizures, and to cherish each seizure free day.

Sincerely,
Maria Hopfgarten
President, Miracles for Mito
Mother of 6-years old Jacob living with Mitochondrial Disease and severe epilepsy, www.momentswithjacob.blogspot.com

It was time for Mitochondrial Awareness Day in Colorado once again. We met at the Anchor Center for Blind Children. This school has become our meeting place for the last two years. It has a great gym and garden for the children, and a good meeting room for families.

We started out the day with a social hour. Families socialized, shared their stories, and connected with each other. Some had traveled as far as Kansas.


After everyone had a chance to grab lunch, which was partly funded by mitoAction, Heather and myself gave an update on Miracles for Mito. We have had a great year. We have slowly grown over the last two years, and we are now in a place where we can extend our support to our community beyond support meetings and meal programs. We announced our new family grant program that will be rolled out later this year. We will provide grants to Mito families for things that are currently not paid by private insurance and Medicaid. We are very excited that we have come to this place with Miracles for Mito!


Heather also gave an update on her Summits for Samantha Courage Classic Team, and the fact that her team raised $88,000 for Children’s Colorado. The money will go directly to the Mitochondrial Clinic to support research, education, and other needs of the Clinic.

Dr. Emily Todd who surveyed the Mito families in March came back to present on the results from the survey. Families are interested in knowing about clinical trials and need support in the day-to-day management of their Mito children. A nutritionist specifically for the Mito Clinic was on the wish list as well as help in navigating the Educational system with a Mito child.
                              
Dr. Johan van Hove followed right after the survey update. His presentation was on the topic of Mitochondrial Diagnosis. He covered the different parts of getting to a Mitochondrial Diagnosis, and how difficult and frustrating this journey can be both for families and the researcher. He shared that one of the best treatments is any type of exercise for a Mito patient. We also touched on the new drug EPI-743, which has had great results in the last Italian clinical trial. One of the moms shared the results of her son being on EPI-743 for a year. His heart function had returned to normal, he can now stand up every day, something he had never been able to do before, and he can track better with his eyes. We all enjoyed listening to Dr. Van Hove, and we all learned some more about Mitochondrial Disease.
             
As the adults listened to the presentations, the kids had a blast with music therapist Sonya Gruszczynski. She put on a show for the kids where they all got to play instruments and participate in her show. Everyone had a good time!

           

No one wanted to leave when the day was over. Many families stayed another hour or two. There were just so many things to follow up on, phone numbers and emails to exchange, and hugs to give for support.

This was our second Mitochondrial Awareness Day. It is so neat to see how we are able to reach out to more and more families living with Mitochondrial Disease. In the beginning, we mainly reached families with children living with Mitochondrial Disease, Yesterday we had families who had lost their children to Mito. We had a sister in the audience who wanted to find out more about Mitochondrial Disease for her brother, who was just diagnosed with Mito. One family called us their life line. It was a good day. It brought me back to why we are doing this.

This morning I woke up to a message that one of our Mito kids is seriously ill in the Intensive Care Unit at Children’s. It reminded me once again how important our mission is to make sure no individual is alone on this journey, and that we make the community aware of this terrible disease. Please send positive thoughts and strength to Robert and his family.

A sincere thanks to Dr. van Hove, Dr. Todd, Genetic Counselor Cathlin Kucera, Music Therapist Sonya Gruszczynski, R.N. Libby Neumann, R.N. Gemma Vega, board members Jim Bishop, Judi Bishop, Laura McCollom and family for making this event happen. Thanks to MitoAction for sponsoring our lunch as well! And last but not least, thanks to all of you who came out yesterday, and made the day so special.

Sincere thanks,
Maria
President, Miracles for Mito
Mother of 6-year old Jacob living with Mitochondrial Disease,
www.momentswithjacob.blogspot.com

On August 30th, it was time for Miracles for Mito’s first, but not last, Silent Auction Dinner. The Dinner took place at the fondue restaurant Melting Pot in Littleton. We had 84 guests attending our event on the Melting Pot Patio. We were greeted by a perfect summer evening, not too hot and not too cold.

We started the night off with drinks and time for people to mingle and check out our Silent Auction. A big thank you to Judi who was in charge of the Silent auction. She did an amazing job collecting donations all spring and summer, and getting it all put together! Not a small job, and it turned out great!

The dinner started out with cheese fondue followed by a light salad. You can’t simply eat when you are having fondue for dinner. You munch a bite of bread and melted cheese, and engage in conversation. It was great to walk around the tables, and see that everybody seemed to have a great time! Laura, one of our board members, had created table cards featuring our Mito children. It just added that extra touch to each table. After cheese and salad, it was time for the main course. It was a meat and seafood platter accompanied with many different dip sauces. We explored the different dip sauces together as a table. It was a lot of fun! Throughout the dinner, people walked around to catch up with friends and of course check on their bids in the Silent Auction. We had several items that were very popular, and some were very determined to be the final bidders!

The dinner ended with final bidding and chocolate fondue. Each table got to choose two different kinds of chocolate. I talked my table into white chocolate, which was delicious! We also had our Parent Speaker, Klaudia Kenderes-Elliott, speak. She talked about what Miracles for Mito means to her family, and how she has gained perspective by being on this journey with her son and so many other families.  One of our Mito Siblings Alexis also gave a little speech about her Mito sister Aislinn, and how important it is to give Aislinn and other Mito children support and a chance to live. I don’t think there was a single dry eye after that impromptu speech.

The Evening was a success. You all who came out to spend the evening with us are directly enabling us to further support our families. We are at a crossroad with Miracles for Mito where we know that we are able to give back even more to our Mito families in the near future. The funds from this dinner will go directly towards that cause.

We are sincerely thankful for you all sharing this evening with us, and we are hoping that you will come out next year again, and spend another fabulous evening with us in the benefit of Miracles for Mito. Look out for details early next year!

In the middle of everyday busyness, the gene that is causing Jacob’s Mitochondrial Disease is confirmed. Sarah’s DNA was the final puzzle piece. Joakim and I both have a bad copy of this gene. We each gave Jacob our bad copy of this particular gene. Sarah on the other hand didn’t get any of our bad copies. It is a 25% chance of each scenario. The most likely scenario (50%) is that our kids would have gotten one copy of the bad gene. So, what does this all mean?

For the future of Mitochondrial Disease research, it is a big discovery. This is the first time they have found a bad copy of a gene in this type of Mitochondrial translation error that Jacob has. The hope is that when they have the gene test available, they will be able to identify a population of patients with this particular Mitochondrial Disease. This should help with further research, and hopefully better treatment and management of these Mito patients.

For me personally, it gets me thinking. This could be the beginning of better treatments for patients like Jacob, but will it be here in time for Jacob? My gut feeling tells me no. I sincerely hope I am wrong, but research does take time. What warms my heart is that Sarah never has to worry about giving birth to a child with this particular Mitochondrial Disease. This means that our possible grandchildren will be healthy. It also means that anyone in our families –both Joakim’s and mine – can be tested by the end of this year to find out if they are a carriers of this gene. You start to wonder. Does the gene come from our dads or moms? Could it possibly impact other future children in our families?

When my mind wanders off to wondering what people will do when they take this test in the future, I can only thank my lucky star that there was no test for us and Jacob. Don’t take me wrong. I would never in my life like Jacob to have this disease that impacts him on so many levels of his life. But at the same time, I can’t imagine my life without Jacob in it. I feel blessed that I never had to make an educated decision, but that I simply got to embrace Jacob as he is for who he is.

My last post “what I would tell myself” (http://www.miraclesformito.org/default.aspx) resonated with many of you who follow my blog. You told me how Jacob has impacted your life. I wanted to share what Jacob’s nanny wrote me after she read that blog post. She shared that day with me almost exactly 6 years ago.

Of all the memorable days that I had when I was your nanny, both the ups and downs, the day you wrote about in your post is one that really stuck with me. I can still hear the heartbreak in your voice when you told me that they had found an issue in Jacob’s brain. I remember going home to Justin that night and just crying over how unfair it was for this to happen to your family and especially to sweet baby Jacob who I already loved so much.
As you know better than anyone, caring for Jacob taught me so many things and really changed the value I placed on even the simplest things in my life. But Jacob and your family gave me one other really special gift that I did not even realize until recently. As you know, Landon was a completely unexpected gift… aka oops-a-baby. So in that moment when I was looking down at a positive pregnancy test, I had a full on panic attack. I was so worried about all the things in my life that were not baby ready yet… finances, my career, our apartment, and maybe even our marriage. But almost in the next moment, I thought about Jacob and that exact day that you talk about in your post.
I am sure that if I told someone, even Justin, that I started thinking about Jacob the second I found out I was pregnant, they would assume that I was worried about health concerns. But that is not it at all… Thinking about Jacob and the strength of your family is actually what pulled me out of my panic. Suddenly it did not matter what challenges were down the road. I knew that we would adjust and be able to handle it, because we would love our child unconditionally. I knew this fact with soul soothing certainty, because I had seen it in action every day when I was with your family.
I will never be able to say thank you enough for letting me be such a special part of your family. I am so grateful for the time I spent with your children. Knowing Jacob taught me more then I even realized at the time. Love, Jen.

I know Jacob will help to write a piece of Mitochondrial history. He will contribute a piece to future medicine and research. But more importantly, Jacob will continue touching lives. That is important to me.

Much love,

Maria Hopfgarten

President, Miracles for Mito

www.momentswithjacob.blogspot.com

Some time ago, a friend of mine shared a blog post about a mom who wanted to put together a video with parents sharing “what I would tell myself the day before I found out about my child’s diagnosis”.  I thought it was a brilliant idea. I would very much have needed that piece of advice myself.

For me, the actual diagnosis was not the big scary day it is for many parents with special needs’ children. The day Jacob’s mitochondrial disease was confirmed, we had already known for years that Jacob most likely had a mitochondrial disease. It was a day of confirmation, but no change.

The moment I remember as one of the hardest was in the middle of a long hospital stay when Jacob was 4.5 months old. Jacob’s neurologist had ordered an MRI of his brain. We were looking for answers to Jacob’s delays and failure to grow. Jacob’s neurologist played with Jacob, they played in fact for a long time together. In fact too long, if you’re planning to tell the parents that something is probably really wrong with your child. When play time was over, the neurologist shifted the focus from Jacob to Joakim and me. He told us that Jacob’s brain had abnormalities. Jacob had in fact hypoplasia of his corpus callosum. He referred to Dustin Hoffman in the movie Rain Man. Well, he didn’t think Jacob had Asperger Syndrome, but he wanted to make the point that you can live with this brain condition. In Jacob’s case, the brain MRI indicated that Jacob might have a genetic and/or metabolic  disorder. He didn’t know which one. He rattled off a list of disorders he wanted to test Jacob for. The only one I today remember is Prader Willi. I remember calling a friend from the car and telling her the news, I remember telling our nanny this piece of news as I came home to get Sarah. I couldn’t even get through the conversation without bursting into tears. My child had brain abnormalities, no one knew how severe, and he had a metabolic and/or genetic disease?! I was scared, devastated, and felt that life was very unfair.

What I would have told myself that day is that the unknown is always scary at first. I would tell myself that being Jacob’s mom I would have to learn to live in the unknown many times. I would tell myself that even the most unknown and scary things will become part of my life. What will always overcome the unknown is the fact that Jacob will rely on me in every unknown corner. It will make me stronger, and able to take on the unknown.

What I would tell myself is that the unknown and scary things in life will make me very comfortable to simply live in the moment. I will learn to not worry about tomorrow, but to completely enjoy each day. I will learn one of the biggest secrets to happiness - to enjoy the small moments making up life. Tonight, I watered my garden. I enjoyed the sound of the rocks under my flip flops. I enjoyed the smell of my rose garden, and the sight of my roses in all shades of pink, red, and purple. I smiled as I heard Sarah laughing with her friend in the alley. I smiled as Jacob tried to move his head toward his sister as his dad was carrying him upstairs to get ready for the night.

What I would tell myself is that I will find happiness again. In fact, I wouldn’t just find happiness, I would learn how to live my life to the fullest, and never turn down an opportunity. I would tell myself that Jacob would teach me the true meaning of happiness by simply being him.

What I would tell myself is that I will learn that life is too short for excuses. When you care for a child who needs your attention all the time, it is easy to remove friends, family, and the things that are important to you. It can happen from pure exhaustion, and more often from people not communicating with each other. I have seen it happening to families. What I would tell myself is that the love for Jacob will be so strong that the relationship can never be used as an excuse. The love will instead be the reason why I will every morning jump out of bed to start my day. The love will be the reason to never say no to a great opportunity even if it doesn’t look like there are enough hours in the day. I will learn that if it is the right thing to do, I will find time and energy. I will create happiness for myself, and I will have a very rich life.

What I would tell myself is that life is passionate and mysterious. It has its own ways of working things out, and everything of great value doesn’t come wrapped in a pretty gift box. In my case, I got two unique beautiful children and my husband that makes life meaningful each day.
What would you tell yourself the day before your child was born or the day before you received the diagnosis of your special need’s child? I would love to hear your story.

Love,
Maria.
President, Miracles for Mito
Mother of 6-year old Jacob living with Mitochondrial Disease,
www.momentswithjacob.blogspot.com

Spring break is over, and summer is around the corner, who wants to think about NEXT school year? If you do have a child with Special Needs, it is a good idea to start making plans for the next school year before School administration shuts down for the summer. This is the prime time to schedule your IEP meeting or start initiating your communication with your school district.

This is especially important, if you know the school district and you might not have the same plan in mind for your child. The earlier you can start the discussions, and explore your options, the better.

Our son Jacob living with Mitochondrial Disease, having extremely low immune system, every cold means a hospitalization, and 4 (!) different seizure action plans in place - everything would point to Jacob being homeschooled.

Homeschooling is the “most restricted environment” for a child. Each child has the right by law to “the least restricted environment”. This means that the school district should always look into options allowing your child to interact with peers wherever possible.

In our case, we had already ventured out in the school world when it was time to get involved with the school district. Jacob was already attending the preschool Bal Swan (www.balswan.org) when it was time to start discussing public preschool for Jacob. Bal Swan had proven that they could keep Jacob medically safe in his “least restricted environment”. Jacob became the first exception on preschool level to not attend a public preschool in our school district. The school district agreed that a private preschool with a proven record of keeping Jacob medically safe was the right solution.

I was exhausted after numerous meetings, evaluations, and negotiations, but at the same time satisfied that the school district recognized what was best for Jacob. I remember that I got the final decision during one of Jacob’s numerous hospital stays. I remember thinking that I would never have to deal with the school district again, since I honestly didn’t expect Jacob to live two years later.

Last spring, I realized that the 2-years agreement with the school district was coming to an end. It was time to get back to the negotiation table, and I was happy that I got the chance to do that once again for Jacob.

Jacob had turned five years old, so in the eyes of the school district, Jacob should attend kindergarten. Due to Jacob’s global developmental delays, we were in no hurry for kindergarten. We felt that the best solution for Jacob was to stay another year at Bal Swan.

I experienced a complete disastrous IEP meeting last spring. Our ARC representative who has attended hundreds of IEP meetings was simply “disgusted”. She had not attended such a political IEP meeting in a very long time. The school district was not interested in continuing exploring a private school option. They simply wanted to put Jacob into the regular program for special needs’ children – either at home or in the public school accommodating children with the most severe special needs. They didn’t want to deal with this mom (me), who had another plan for her son. In the end, it was obvious to the school district that they simply couldn’t provide the same solution as Bal Swan. Jacob got to stay at Bal Swan for another year.

Since Bal Swan is a preschool, I knew I would eventually have to look at other schools for Jacob. It was with great delight and relief when Bal Swan announced that they were adding kindergarten for the school year of 2012-2013. That was just in time for Jacob to start kindergarten!

As soon as I found out about the kindergarten program at Bal Swan, I e-mailed the assistant Director of Special Education in Jacob’s school district. I told her the news, and that I wanted Jacob to attend Bal Swan for yet another year.

She scheduled a meeting where we could “feel each other out”. In this meeting, they painted the public school in light colors, suddenly being able to accommodate all of Jacob’s needs. They could “replicate” Bal Swan”, and I could either start attending the public school or reject their option. They were not open to negotiate yet another year of Bal Swan.

I didn’t like their tactics, but I also realize that Jacob can’t stay at a preschool forever. I negotiated to see if they would be open to both Bal Swan and the public school. It would be a year of transition to see if the public school can keep Jacob medically safe or not. I could sense that the school district was willing to meet me half way.

And this is where we have to take a chance. We have to try out the public school to see if Jacob can ever attend a public school or not. We don’t know, and we will never know, if we don’t try. School brings meaning to Jacob’s life. That’s where he makes friendships, and where he is a kid amongst other kids, we need to make this happen for him, if we can.

So, we left the meeting, with a possible solution of doing both Bal Swan and the public school for the next school year. After that meeting, we have visited the public school several times to make sure this would work for Jacob, and what modifications and accommodations we need to ask for. The public school team has visited and observed Jacob at Bal Swan multiple times to get to know Jacob, and see how they can “replicate” his current school environment. This goes for both teachers and therapists. There is collaboration between both schools.

On April 11^th, we have the actual IEP meeting. After last year, I know that an IEP meeting can get nasty and emotional. I am bringing a team supporting Jacob including his teacher, his nurse, his ARC representative, and his speech therapist. A team, who is looking out for Jacob’s needs. We know what we’re proposing. We know what is not negotiable. We know what we might be able to negotiate. In the case of Jacob, there is also yet another stakeholder, and that is Jacob’s primary care physician. She is actively involved in Jacob’s school decisions, and she is still saying “no” to public school from November-April. This means that during 6 months, Jacob would only attend Bal Swan. She feels that public school can’t keep Jacob safe during respiratory season. For her this is non-negotiable.

So here is a summary of a few strategies to think about as you plan your child’s IEP:

1. Think through what is the best school solution for your child. This might not be the “easiest” solution for the school district, but what is the best solution for your child? It might not be a question of school placement like for us. It might be a question about equipment, therapy, nursing care, interaction with other children, modifications to the school schedule etc. etc. The list can be long.

2. Bring a team who you know will support your school solution. Don’t go by yourself. If it gets emotional, you know that you have others who can step in. Bringing “neutral” players, e.g. teachers, therapists, help a lot to support your child.

3. Think through your negotiation strategy. What is your best alternative to the negotiated agreement? What is the other side’s strategy? Ask questions, and feel out the other side before the actual IEP meeting.

4. Always stay on target, remove emotions, be prepared, and be organized. Be polite, but firm. Be assertive. Don’t get aggressive.

5. Provide information about your child. Don’t assume that they understand the needs of your child.

6. Nurture the relationship with the school district. You might not always agree, but you will need them for the long run. Through disagreements, there has always been respect for each other’s perspectives. We are mutual players at the negotiation table.

I am not sure how Jacob’s IEP meeting will go, but I am coming in 100% prepared, ready to advocate for my child. I know in my heart and head that Bal Swan is the best school solution for Jacob. But I also know that Jacob can’t stay at a preschool forever. I am therefore willing to find the best of two worlds. What is the best solution for your child? What could make it better? There is nothing that is too big or too small to ask for. You will never find out if it’s possible, if you don’t ask.

If you ever need to discuss negotiation strategy, let me know. I would be very willing to explore options with you for your child.

Good luck on providing the best school solution for your child, and then let’s enjoy that summer before it’s time to return to school again!

Thanks,

Maria Hopfgarten

Vice-President, Miracles for Mito

Mom of 6-year old Jacob living with Mitochondrial Disease, www.momentswithjacob.blogspot.com

Yesterday, Miracles for Mito had its first support meeting for the year. We doubled the size of our meeting this time, and had 50 people attending our event! It was spring in the air, which is a good thing when you have families traveling from out of State. The Anchor Center for Blind Children welcomed us once again to its beautiful facilities in Denver.

Our kids love the Anchor Center, especially the gym! The ball pit was one of the favorite places once again. With the spring weather, the kids also could took advantage of the beautiful garden. The kids were riding bikes outside. We also had crafts of different sorts, and cool tattoos! Our music therapist Lisa Townsend once again put on a show for the children. She is amazing in engaging the kids’ all senses, and she finds a way to get all children involved.

Parents found support in each other. Finding another parent who can help you to get the right seating system for your child’s wheel chair. Finding another parent who sees the same doctor. Finding another parent who gets it when you say that the future of your child is uncertain. Finding another parent who understands what it means that your child might have Mitochondrial Disease or maybe something different? Finding someone who gets it.

Our nurses and volunteers played with the children while the parents got to listen to two informative presentations. Our first presenter was Gina Robinson, Program Administrator from Medicaid. She gave a good overview of Medicaid, but more than anything engaged the parents in dialogue about their specific questions and issues around Medicaid. Personally, this is the first person who has told me that she is going to take on the issues around the waiver my son is on. She gave us hope, and solutions where we at times had given up.

Our next presenter was Dr. Abigail Collins from the Mitochondrial Clinic at Children’s Hospital Colorado. She gave an update on the Mitochondrial Clinic. There are many exciting things happening in the Clinic. The first thing is that they are expanding. They will go from three appointments per month to seven appointments per month. They are also looking into how they can expand the care for our children, especially in the day-to-day management of Mito children.

Our meeting always run long, but after four hours of play, education, social time, and food, it was time to pack up! The kids were happy, and left with colorful balloons. The parents were excited, and left with new information and new friends.

In the middle of living with Mitochondrial Disease, there is a place for support, finding a friend, listening to music, having fun, and more than anything, knowing that you’re not alone on this journey.

Thanks to Music Therapist Lisa Townsend for entertaining our kiddos, to our nurses Libby Neumann and Gemma Vega for caring for our Mito children, to Gina Robinson and Dr. Abigail Collins for taking time out of their Saturday to talk to us, and lastly to our Board Members playing with our children, baking goodies and providing lunch!

And THANKS to all of our families for driving near and far to spend your Saturday with us,

Maria Hopfgarten,
Vice-President, Miracles for Mito
www.miraclesformito.org

We’re ending the Mitochondrial Awareness Week with a Post about Advocacy from Miracles for Mito’s Vice-President Maria Hopfgarten. 

Having been part of Miracles for Mito this past year, I have had an opportunity to talk to several parents of children with Mitochondrial Disease as well as adults living with Mitochondrial Disease.

Many of the children and adults don’t have a confirmed Mitochondrial Disease. It is a probable, possible or unspecified Mitochondrial Disease. For many doctors they are still considered undiagnosed patients rather than Mitochondrial patients.

Many parents of probable and possible Mito kids are frustrated. They feel that they are not taking serious. They come into the Emergency Room with a very sick child, but no one has heard about Mitochondrial Disease or knows how to treat it.

It is frustrating. It is heart-breaking. It is tiring. It is draining. It has in some instances gotten so far that the parent or carrier of Mitochondrial Disease starts to doubt themselves. Maybe they don’t have Mitochondrial Disease? Maybe this is all in their heads? Maybe they are not even sick? Maybe this is all pretend?

This is where advocacy becomes critical. There are many great doctors out there, but there are very few doctors who know about Mitochondrial Disease or even want to specialize in that particular Disease. That is a fact, and we all should be aware of that fact.

It becomes your job to find a doctor who knows or wants to learn about Mitochondrial Disease. There are lots of information on Mitoaction’s website (www.mitoaction.org) that you can give your doctor and ask them to read up on before you see them next time. If they do, and they want to partner with you on this journey – great! If not, you have to find a new doctor. Noone else will do that for you. I know it can be hard. I know it can be a battle, but the fact is that it is too important to not have doctors following you that will support you every step of the way. Not every doctor in the ER will be a Specialist in Mitochondrial Disease, so having the right letters in place from your Mitochondrial Doctor that will let the ER team know what you or your child need is critical. You can find sample medical and school letters on Mitoaction’s website, so it will be a simple step to get them customized for your case.

So, if you do feel that you have gotten stuck, that you are going from doctor to doctor telling them about Mitochondrial Disease, but you’re not getting anywhere. It is time to prompt your doctor to do his research, and then make your decision based on your doctor’s response.

Advocacy is something we all can do. Advocacy is one of the most powerful tools in making sure you and your child get the appropriate care. In our case, not every doctor on Jacob’s team is a specialist in Mitochondrial Disease, but his two most important doctors are. They will then work with Jacob’s other specialists, the ER, and in-patient physicians to make sure Jacob gets the appropriate care.

If you do feel stuck, never hesitate to contact Miracles for Mito or myself directly to strategize about next steps on your journey.

Thanks,
Maria Hopfgarten, Vice-President Miracles for Mito
Mom of 5-year old Jacob Hallberg living with Mitochondrial Disease, you can follow Jacob at www.caringbridge.org/visit/jacobhallberg