Give Isiah a lift Fund
Meet Isiah, He came into this world in the usual way. The third child to very happy parents. This very loud 6lb 2oz boy had a very different and meaningful journey in store for us. We knew from the start that "something" was different.
After a VERY long and difficult first year of life we got the diagnosis of Merosin Negitive Congenital Muscular Dystrophy. Say that 5 times fast. Essentially Isiah is missing Merosin. Considered to be and Ultra Rare and progressive disease. Isiah is missing the llama2 protien in each and every muscle in his body. This creates weakness in everything from sitting and Breathing, to making things like "tummy time" and Eating by mouth impossible. This also creates "contractures" in most body joints. Isiah has had them in his fingers, elbows, ankles, hips and knee, he has had surgery for his hips and ankles but unfortunatley they have returned.
Yet this Incredible little man smiles EVERY day. Healthy and sick he is funny and loving and always trying to help his Big brother, Big sister, Dad & mom. He LOVES to play jokes and pretend to be Robin.....Not Batman but YES Robin. Isiah likes to do magic tricks and visit the zoo. His favorite animal is a Bat, because they fly of course.
Isiah has battled RSV, pneumonia (6 times), 5 surgeries, and the very common cold that last him an average of 3/4 weeks. He's had TO many hospital stays and still smiles when he sees his doctors.
For the First 4years of his life we lived in a Bi-level home. It only worked because Isiah was so small (-3% for his weight) everywhere we go he needs to be carried. For his saftey we have to carry him like and infant because he cannot support himself in any way. He was not able to use any mobility device in that house due to his lack of strenght and the amount of carpet. So the family Decided it was time to find a house that was accessible for ALL of Isiahs need
So the Hunt was on and in September 2014 we found the house that will be Isiahs Forever Home. BUT and this is a BIG BUT, a few things needed to change like flooring and carpet and on and on and on the revenovations went. The bathroom in our home is now on the second floor. This means that every day we have to carry Isiah up and down for any bathroom needs. There is space to open a wall in Isiahs room and Create a fully Accessible bathroom for him. But no funds because of the other accessabilty changes we had to make. We also did ALL the work ourselves to cut cost wherever we could. By March of 2015 we are able to live here. There are still many things to do but it's safe for Isiah and his siblings.
Now that we our in our home, Isiah is getting his first power chair. Having now grown to be in the 75% for weight, roughly 50lb and still like an infant. And YES I still carry him EVERYWHERE. and YES he's bigger than His BIG brother. The house will accommodate his new power chair but we have no way to transport it. So now, after we have gone though all this we find that Insurance can't help. They pay for the chair......which I'm endless grateful for. but can't help with a van or even a lift on our van.
We have looked into Grants and find that we do not qualify for many if any at all. We live a modest life and with 3 small children and Isiahs needs We ask for help to make a Lift Van and Bathroom for Isiah a reality. Mom and dad can only carry this BIG boy for a little while longer before the strain starts affecting our bodies.
I hope that you will consider making a donation to make his life a little easier. Thank you from the bottom of our hearts for reading about Isiah and his journey.
