It's that time of year.  The birds are hatching...the flowers are blooming...the days are longer...and it's getting warmer.  

Ah, warmer weather.  Our friend and foe.  Warmer weather means not being stuck inside the house, for fear of cold and flu catching us.  But, warmer weather also means not being able to regulate Max's body temperature easily.  

Take tonight, for instance.  I am in the bedroom with Max, writing this. The window is open, a fan in the window sill blowing in the 45° rainy weather and the ceiling fan at full speed.  I have a long sleeve shirt on, fleece yoga bottoms, socks, a down comforter, and a quilt on me.  Max is laying on his bed, with only his diaper on, and I'm wondering if he will stop sweating once he goes to sleep, so I don't have to change his sheets for a second time today from getting soaked with his sweat.  

Dysautonomia is common in both children and adults with Mitochondrial and Metabolic disease.   My son sweats excessively.  We never put away our winter clothes, because year round, it's 62 degrees in our house.  We have shades drawn to block out the heat from the windows, change the filters so the air can run efficiently, run fans, and the air conditioner around the clock when it's hot out to keep him cool.  In the winter, we rarely run the heater so he doesn't overheat.  It's not just a matter of comfort; none of us likes being hot.  But, he simply can't tolerate the heat.  When he's too hot, he becomes dehydrated from all the sweating, and can even have seizures.  

MitoAction.com has some great articles explaining Dysautonomia in those living with Mito, and a list of ways to help keep yourself cool through the hot months.  For some living with Mito, they can overheat because they don't sweat.  In either case, of sweating too much, or not at all, it's important to stay hydrated.  We add 8-10 ounces more water a day to my son's liquid intake when it's hot outside to compensate for the extra sweating.  

We use a cooling vest for Max, and that seems to help on the hottest days, when he's going to be wet from the sweat anyway.  The vest soaks up cold water and he wears it wet to cool him.  We also have cooling bandanas, ans spritzing water bottles and portable fans.  Sometimes I simply warp up ice packs in towels and place them around his body, moving them frequently so he doesn't get frostbite.  Max doesn't eat or drink anything by mouth, but I will also ocassionally give him little bits of snowcone sized ice chips to cool him off.  

This is a great list of funding resources for cooling yourself and your house this summer.  

What are some ways you stay cool in the warmer weather?  

Deana is mom to Monster Max, who lives with the Metabolic Disease,  Methylmalonic Acidemia + Homocysteinuria, Complementation Type C, and epilepsy.  You can find Max's blog at www.maxwatson.org

Heather has asked me to take on the role of President for Miracles for Mito, and I am honored to take on that role. Laura McCollom will continue to serve on the Board, and she will be involved in our marketing initiatives as well as many of our events. Laura truly helped Miracles for Mito to get up and running over the last two years, and we’re so thankful for her dedication, project management and leadership skills. Thanks, Laura!

We have been off to a busy 2012. We had our first Support Meeting in March, and we doubled our attendance! We had 50 people attending. We had Dr. Abbie Collins from the Mito Clinic and Gina Robinson from Medicaid as our guest speakers. We also offered music therapy, child care, and lunch to everyone. 

Our next family event is a pic-nic at the Anchor Center on Saturday June 16^th. This will be a time for families to hang out together. We decided to rent the Anchor Center, since many of our kiddos might need to go inside if it is too warm outside or they can’t be in direct sun light due to seizures. We hope you can make it! 

Deana has also headed up our meals program for Mito families being in the hospital. This has been very well received by our families. 

We are collaborating with the Mitochondrial Clinic to see how we best can work together this year. We are creating a Resource Page together that will go into a welcome package to each family being seen in the Clinic. We are also looking into the possibility of being present at Children’s Hospital during the Clinic to be available for newly diagnosed families. We are also continuously giving our input to the Mito Clinic, and most recently a survey went out to all Miracles for Mito families to give input on the Mitochondrial Clinic. Please take the time to answer this survey, if you haven’t already. 

We are also working with MitoAction (www.mitoaction.org) to see how we best can collaborate together in the future. MitoAction and Miracles for Mito seem to be a good fit for future collaboration. 

We are also busy planning our fundraising events for the year. We are having a Fundraising Party “What you didn’t receive for Mother’s Day” on Sunday May 20^th from 2:30-5 pm at the McKay Club House in Broomfield. Details of the event will shortly be up on our Event Page. Please come by and see us! We will have drinks and snacks, and several vendors who are all giving their sales proceeds to Miracles for Mito! 

On June 14^th, we are ready for the Epsilon Walk. This was our biggest fundraiser last year, and we raised $4500 from this event alone. We are excited to see Heather’s work supporting this event for a second year. 

On August 30^th, we will have a Silent Auction dinner at Melting Pot, Littleton. Tickets go on sale June 1^st  on our website, so please look out for more details closer to that date. This will be a fun evening, and we’re hoping to see you all there!

We are also very excited about Summits for Samantha once again riding the Courage Classic in honor of Samantha for the benefit of Children’s Hospital Colorado. The team has already raised over $13,000. The goal is to get to $50,000, since we then get to decide where the funds go within Children’s Hospital. If you want to ride with Summits for Samantha, please contact Heather directly! 

I feel that we’re off to a busy, but great 2012! 

Thanks everyone, and please never hesitate to contact Heather or myself, if you have any questions or need any specific support.

Maria Hopfgarten

President, Miracles for Mito

mhopfgarten@gmail.com

Heather Schichtel

Director, Miracles for Mito

Heather.Schichtel@gmail.com

Neuromuscular scoliosis occurs with some types of neurological disorders, including spina bifida, cerebral palsy or muscular dystrophy. In these instances, the children’s trunks are not strong enough to support themselves fully, and the spine curves into a long C-shape.

Got it. Dermot has this. A 50 degree curvature in his spine. "Severe" in the words of the first orthopedic surgeon we've ever met.

He was a kind man, by just looking at him you would probably guess he was about twenty-two years old. Of Asian descent, no visible wrinkles and wearing a stylish outfit (as far as doctor's go). He carried himself in a hurried fashion as if he was late for his chemistry final. Having already been briefed by his resident, he sits down at the end of the examination table, grabs Dermot's feet and begins to maneuver Dermot's limbs in a peculiar fashion. Then he asks to have Dermot sit up, slightly offended I immediately point out the obvious fact that Dermot does not "sit up". The doctor asks that I support him, which is asking a lot, especially in the now very crowded examination room.

Dermot sits up, with a great degree of assistance from me, and attempts to lift up his head to look around. No such luck. Dermot's long nearly six-year old body curls forward, he slumps his head nearly to his lap. While he's sitting like this the doctor talks about the many faults of his posture, comments on his lack of head control and the fact that his head leans to the left side, all the while Dermot is drooling profusely on my hands as I try to support him. "Are we done yet?" I ask. "Oh, yes. You can have him lay back now, sorry" says the doctor.

Then he begins to talk about the severity of the curve in his spine, why it has happened and what they can do to slow the progression. A brace is highly suggested. "Really?" I ask. "Can't we modify his wheelchair to a more rigid seat?" Hoping I'll be able to talk him into this. I let out a heavy sigh. "I'm afraid that treatment won't be aggressive enough for him" he answers back. Then images of a turtle's shell wrapped around my little boy twenty four hours a day, pop into my head. I fight back the tears. I don't normally have an aversion to crying in the presence of doctors, but this guy, he's new and I'm still trying to talk him out of his decision. The tears seem to soften his demeanor a bit and he continues his explanations in a soft, soothing voice that calmed me. He looked me in the eye, which doesn't always happen with doctors, and I believed him.

He walked us through the X-rays, showing us the dramatic difference in Dermot's spine in the last year and I knew. The turtle shell was in our future. I guess I can be grateful that he didn't suggest surgery right now, but I know that's in our future someday. For now Dermot will have yet another custom-molded plastic piece covering another part of his body.

Imagine for a moment tucking your son into bed. Remember to place the leg immobilizers on each leg with four Velcro straps for each leg. Don't forget to plug in his feeding pump to his mic-key button so he'll be properly nourished overnight. Place his neoprene hand guard on his left hand so he doesn't chew his skin until it bleeds. And now, carefully lift his growing body inside the shell and put his jammies on.

For tonight, Dermot is free. No equipment, just the feeding tube. I'm his mom. I can give a break tonight.

Sue Sullivan lives in Edina, MN. She is a mother with three beautiful boys. Two are typically developing, and one has a rare mitochondrial disease. Dermot is the reason Sue writes. Sue’s motto in life is to be happy, joyous, and free. 

 Http://Sullivanedinaboys.blogspot.com

Http://designedandbeaded.weebly.com

This weekend I spent quite a lot of time with my family who live in town, since my mom was here visiting.  It's always extra activity when family comes to visit, extra people in the house.  Extra food to make.  Extra cleaning up.  But, in the end I'm glad I have the space and ability to make a place for us to be together. 

When I woke up this morning, I was pretty exhausted from the weekend already.  I wished for a few more minutes of sleep, but Max wasn't up for that.  Not that he wanted to get up, he just didn't want me to sleep anymore.  That's his game.  

I got up and made his food, and medicine, and picked out some clothes for him to wear today.  I started making the dessert for our lunch together, and prepping the food too.  When my sister got to our house with her daughter and husband, I could see that they were visabily tired.  They looked worn down.  Life with a head-strong toddler will do that to you!  

I thought about my own tiredness, and remembered, that having a child with special needs does not give me the right to claim all the exhaustion in the world.  We've all got a story.  My brother in law has been very sick this past year.  My niece has taken that opportunity to push her limits with her parents.  And my sister is exhausted from it all.  No, her life is no easier than mine.  

It's easy for us to look at someone else's life and say they have it easier, or I have it harder...but we don't know.  We can't know everything.  I am trying to remember that.  Just because someone doesn't have the same circumstances that I do, does not make their circumstances better...just different.  

-Deana

Deana is mom to Monster Max, who lives with the metabolic disease, Methylmalonic Acidemia and Homocysteinuria, Complementation Type C, and epilepsy.  

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

We’re excited to welcome Sue Sullivan as Miracles for Mito’s new blogger! Sue Sullivan lives in Edina, MN. She is a mother with three beautiful boys. Two are typically developing, and one has a rare mitochondrial disease. Dermot is the reason Sue writes. Sue’s motto in life is to be happy, joyous, and free.  We hope you will all enjoy her blogging and thoughts about being Dermot’s mom, and we welcome her to our blogging team!

As she rolled into the waiting room I recognized the wheels right away. The curve in the metal tubing was almost identical. Although larger and purple, it was most certainly the same wheelchair as Dermot's. I felt a strange kinship with the owner of this chair and I hadn't even looked up yet.

She had to be about 12 years old, her body was stiff, limbs twisted, her face quite gaunt. Her medium length blond hair was pulled back and looked as though it hadn't had a proper washing in weeks. I was set aback. Feeling quite awkward, I tried to make eye contact with the girl's mom. Eager to give her a knowing smile to let her know that I know what she's going through. I did not succeed with my eye contact so I resumed my focus on Dermot while we continued our never ending wait in the doctor's lobby.

I couldn't help sneaking glances of this severely disabled girl. A respirator hose protruded from her throat, I could see the machine that was breathing for her carefully placed behind the same wheelchair I push around daily. Then I glanced at her AFO's that covered the entire lower part of her legs. I thought about Dermot's tiny SMO's that he only wears when he's standing. I looked at her hair once again, I tried to imagine the huge task of bathing her. It was obvious she didn't receive a bath everyday or even every other day like Dermot. I wondered if she had a bath lift or a shower chair that her mother placed her in to clean her. Did she have to be hooked up to the respirator at all times? Did she even get showers? Perhaps she was only allowed sponge baths. I thought about how much Dermot enjoyed his baths and felt a tinge of gratitude. I noticed the spasticity in her limbs and wondered if she was here to for a follow up visit after hip surgery, I thought of Dermot's upcoming Botox injections and wondering when we would wind up on the road to hip and/or spine surgery.

Then she vocalized. A very faint "ahhh" and I watched as Dermot perked up. She "talked" again, this time louder, Dermot smiled. Another "ahhh", with his grin going strong, Dermot answered back with his own brand of "AHH!". This went on for a minute or two, then I got it. Eye contact. Her mom and I smiled at each other.

It was an exhausting three hour and fifteen minute visit at the physiatrist that morning. A few x-rays, a preliminary conversation with the nurse, a long conversation with the doctor that ended with an explanation about proper hip development, an appointment for next Wednesday for Botox injections in each hamstring, an appointment to meet an orthopedic surgeon, an appointment for a wheelchair upgrade, a prescription for something to stop Dermot's drooling and a SMO fitting. It was only natural that I was feeling overwhelmed and sad, but going back out to the waiting room to wait for the ortho guy to fix Dermot's braces was a reminder.

No matter how hard I think my life is, and it is pretty hard at times, it could always be worse. I could be the mom that wheels her child into the waiting room, with the respirator, the unwashed hair and the full leg braces. Perspective. It's a powerful thing.

Http://Sullivanedinaboys.blogspot.com

As part of our support, we are aiming to also educate more people about Mitochondrial Disease.  In doing that, we asked our families at our recent support meeting if they had any questions they would like us to respond to.  If we don't know the answers, we will try to find someone who does!  If you have a question you would like answered, leave it in our comments section, or email us at miraclesformito@gmail.com.

We handed out note cards for questions in the support meeting. We got a question from one of the siblings.

"How many people live with Mitochondrial Disease?"

That's a great question.  We looked at MitoAction.org and UMDF.org to answer if for you.  

Every 30 minutes, a child is born who will develop a mitochondrial disease.

Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease.

While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers. Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging. Still others aren't diagnosed until after death.

In adults, many diseases of aging have been found to have defects of mitochondrial function. These include, but are not limited to, type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. In addition, many medicines can injure the mitochondria.

Source: http://www.mitoaction.org/mito-faq#how http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692895/k.B04C/FAQs.htm

.::Disclaimer::. This site is not designed to, intended to, and does not provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual. Through this site and links to other sites, this site merely provides general information on personal and individual experiences in dealing with Mitochondrial Disease (Mito), and is for educational, discussion, support, and cathartic purposes only. The information provided in this site, or through links to other sites, is not a substitute for medical or professional care, and you should not use any information in place of a visit with a qualified physician, call consultation, or the advice of your physician or other healthcare provider. By viewing this site and participating in any discussion, or reading any of the posts on this site, you expressly and explicitly agree that neither the site owner, nor any contributors, followers, friends, or anyone else associated with any information exchanged or provided on this site is liable or responsible for any advice, course of treatment, diagnosis or any other information, services or product you may obtain through information provided on MiraclesforMito.org.

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