Ali is 13 years old. She was born with Arthrogryposis (AMC), it affects her joints and muscles, in all four limbs. She is still a happy go lucky girl, With a Dream of Walking. Ali has made it through 20+ surgeries and lots of casting on her legs and feet.
In July 2018 we were able to go to an AMC Conference to learn more about options to help Ali. There we were fortunate enough to meet Dr Feldman out of Paley Institute in West Palm Beach Florida, who has lots of experience working with kids like Ali. Ali was able to watch his presentation and some of the surgeries he does on the legs to get them working. After that Ali talked to Dr Feldman and he told Ali he can help her walk. So in August 2018 we went down to Florida and did all the X-rays and Dr Feldman explained everything that he wants to do so Ali can walk after 3 major surgeries and lots of therapy and hard work.
She is currently learning to stand again as her back was fused in August 2021.
The BIG Problem is he doesn't take MI Medicaid. The family needs private insurance and the cheapest is 15,000 a year for all the surgeries and therapy for Ali. We are trying to raise the money through gofundme and selling crafts to give Ali her last chance at walking. Any donations are appreciated her page as well: gofundme.com/help-ali-walk
Maddie was born with an immediate difficulty to eat, She was taken to Devos immediately and placed with a NG tube. Throughout many months of trials, insurance battles, and different doctors, she remained a medical mystery.
She has lived her life with leg braces, feeding tubes, neurodevelopmental delays, and cognitive/speech impairments. When Maddie was a year old, they finally got the genetic testing results that showed she had an extremely rare genetic mutation on the AUTS-2 gene. The mutation is so rare, the disease isn't even named.
Maddie just turned 4 years old this past December and is still full of persistence and joy. She makes everyone around her smile! She has been healthy, with no major surprises regarding her AUTS-2 diangnosis at this time.
In fall of 2020 she started walking! As an infant we were told she may never walk, talk, or eat. So this is a HUGE accomplishment for Maddie.
She is SO excited to explore the world around her with a little bit of help. She has had a very slow but steady progression with her gross motor skills.
We are still waiting to hear her little voice but we have hope that one day she will talk. She is working hard at Wesley School with her teachers and therapists to learn AAC (Augmentative and Alternative Communication) and we are so thankful for everything they are doing to help Maddie as a whole.
Despite our best efforts Maddie is still 100% dependent on her G-Tube feedings, but she is now willing to taste thickened drinks and baby purees. Admission to the Intensive Feeding Feeding program in Grand Rapids is pending due to her delayed cognitive development and speech.
We continue to have routine check-ins with her specialists at Devos to monitor and adjust care for various other issues.
Kids Food Basket
In 2001, a Grand Rapids Public School principal witnessed some of her students digging through the trash for food to take home for dinner. Mary K. Hoodhood, a long-time advocate, heard this story and set into motion a grassroots community response: Kids’ Food Basket. In 2002, we started by serving 125 kids every weekday at three schools through our Sack Supper program.
Today, we serve approximately 8,800 every day, but our work is not done. We work for the day when every child is nourished.
In 2012, we introduced our second location, replicating our proven Grand Rapids model to help serve and reach more children in need. With the help of the Muskegon community, Kids’ Food Basket introduced our Sack Supper program at Martin Luther King Jr. Elementary in April 2012. Since then, Kids’ Food Basket has grown to serve approximately 1,300 children at six schools in Muskegon each weekday! The Kids’ Food Basket Muskegon Program is fully funded and supported by the Muskegon community.