The Princess & The Monkey

Because it is Mitochondrial Disease Awareness week, I thought it was appropriate to share a story about a child with Mitochondrial Disease. Her mom, Colleen, happens to be a member of the kidz krew.

Bob and I have 2 children, Kennedy (8), Zach (5)..and Bob has twin daughters (15)

Kennedy- went in for ultrasound @ 33wks and found out I had barely any amniotic fluid. She needed to be delivered. I was so nervous (this happened on September 11 also, so everything was crazy). She was delivered the next day after a long quiet night. Zach-I was excited. I was so nervous during ultrasounds making sure all the amniotic fluid was fine. He was delivered full term with no complications.

Kennedy-healthy newborn, but started to see issues when she wasn't meeting milestones of sitting up, crawling, etc. She started seeing specialist around 2 years old, but couldnt find anything but some abnormalities that didnt pinpoint any disorder. She had global delays and ftt, but was fairly healthy. At almost 6 she had a small seizure and started meds. After she turned 6
the seizures increased very quickly and were hard to control. She was hospitalized for almost 2 months. She was diagnosed with Mitochondrial Disease Complex I at that time. She suffered damage, became immobile and couldn't eat or talk anymore. Her seizures were well controlled for one year and now she is back in the hospital with them starting up again.

Zach- healthy child. started noticing speech delays at a year. He did not even babble. At 2 he was diagnosed autistic.

Kennedy has been hard, because initially we thought we had a child with a physical disability (CP) but was healthy. When she started having seizures and became ill, it was hard dealing with the thoughts that she might not be here with us long. It is something we still are dealing with.



Zach- We were not suprised by the diagnosis...from birth we noticed he was content doing things on his own. We knew from doing therapy and his delays that he would probably get that diagnosis.



It is difficult having two children with different disabilites. I have sometimes wanted more children, but the thoughts run through your mind...should we? Is it fair to our children that need so much from us? Is it fair to a new baby? Would this child have a disability?

I just try to think optimistically. I like reading other's blogs, and trying to give my support to others with special needs children. I think that is my coping mechanism. I also have started reviewing some Christian literature more recently and find I like books that are spiritual and are based on special needs.

Kennedy has mitochondrial disease... Information can be found at umdf.org and mitoaction.org. With this disease, you mostly have to treat the symptoms. There is no cure. Most take some supplements like CoQ10 and levocarnitine. We have tried many things for the seizures that have helped a little while, best one that has worked for a long time were combo of phenobarbital and felbatol. We are probably going to be adding something soon.

Bob's daughter Cortnie also has seizures. She was doing good for a while and wasn't on anything, but started having them again a year or two ago. She has had to play around with combos also. Her twin Corie does not have any.

Zach-we mostly just try to deal with communication and behaviors. He has done lots of head banging, but has gotten better by increasing communication skills and distraction. We and school use picture schedules and social stories and they help a lot.

Kennedy loves toddler stuff like Backyardigans, Laurie Berkner band, and Dr. Seuss books. She has a great sense of humor and is a very happy girl. She loves when others get into trouble and laughs so hard. Zach loves music stuff, especially right now he loves singing The Wonderpets song and loves to dance to The Fresh Beat Band. He loves trains and cars and MIng mIng.

Our goals for Kennedy are to stay healthy and get rid of these seizures! With Zach we'd like to see increased communication skills and hope he stays on track academically. He just started Kindergarten. Right now he spends part of the day in special education room because he loses focus in big groups. He is strong academically and we are hoping this helps him stay that way. He too is a very friendly kid, just sometimes is happy playing alone.

My advice to others is to trust your feelings...if you are feeling your toddler is having delays or issues, go ahead and call the doctor. I think early intervention helps so much. It helps educate the parents as well as helping get appropriate services for your child.