The Mito Family Social was…
The families that came have been battling with Mito for much longer than us and are so comfortable in talking about their journey. I admire them immensely for this.
As the first family arrived with a 12 yr old boy in a wheelchair with a vent tube in his throat, I almost lost it.
I ran to the car to get my sunglasses so I did not upset the parents or the child.
The second family had two bouncing boys that did not have any noticeable limitations.
The third attendee was a 33yr old woman who again did not have any noticeable limitations.
The fourth family arrived with another wheelchair bound boy, 7yrs old.
All of the children were wonderful which really helped me keep a positive outlook.
The 12yr old was a normal boy on the inside but stuck in a body that was failing him. He was chasing Adelaide around, wanting gum, getting fruit chews and not happy about it and acting like he couldn’t hear us. He could not speak well, had a feeding tube, could not walk well and had other symptoms from the disease. He was diagnosed at 8years old and prior to was a “normal” boy running around, riding motorcycles and talking freely. His parents are doing an amazing job with this guy, his sense of humor and loves shows in his personality.
I cannot begin to understand how his parents must feel and how they dealt with the change.
They said he has not asked why they can walk and he cannot. I don’t think I could handle that question if I was them.
The 7yr old is defying all odds as his mother lost his older brother before 1 yr of age to the same disease. This guy is very sweet and nervous around strangers and said to have the mentality of a 9month old, but I saw so much more in him. He can walk with a gait trainer and can unbuckle his seatbelt and take his arms out of his arm straps. His mom is doing an amazing job and he has an older sister who ran around with Adelaide.
The bouncing boys…such cuties, one has a feeding tube that has worse symptoms than the other and was not diagnosed until he was 4 1/2, he is approx 6-7 now. His little brother has the same disease but milder and no feeding issues.
This mom was really able to relate on the importance of routine, proper nutrition, rest and staying hydrated.
The woman was the first person that I have met, that could speak on the disease and how it makes her feel and symptoms she is developing.
She expressed how exhausted she feels and cannot find the energy to go to the gym. Her hearing is starting to go and she cannot find work due to her limitations with rest needed and she has a teaching degree.
I will not share any photos from the day unless the families say it’s ok.
The mom’s were all shocked to hear Daphne does not have a feeding tube and has not been hospitalized for sickness to date.
I hope I did not just jinx myself and can keep her strong and healthy.
This winter has me terrified though!
One thought on “Mito Family Social”
Thanks for sharing this experience des! It sounds like the gathering was challenging, but also comforting and inspiring – bittersweet.
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