Financial Assistance for DM1 kids with Autism or ASD

As many parents with children with myotonic dystrophy know a high percentage of kids with this disease have autism or autism spectrum disorder. Because the childhood form is not a separate disease this often cause a lack of support from the medical profession. This website is building awareness of the autism and ASD within the myotonic dystrophy community.

Often kids with DM1 and Autism disorders need help and assistance. I have found an organization that assits with Autistic kids and gives grants. The group is called Act-Today.
They are a great organization and have given many grants. Click on the name above to go to their website. Here are a few of the people that they have helped. This is a great organization and I would encourage you to visit their website. IF needed you can apply for a grant for assistance!.

Joseph
We are so grateful to ACT Today! for the grant you gave to our son, Josef. Josef is an active child and enjoys many activities. We strive to provide him with many opportunities for socialization as this is a challenge for him. Unfortunately our budget has been severely impacted since my husband’s diagnosis of stage IV kidney cancer. We are both self employed and had already been experiencing financial pressure due to the economic downturn prior to my husband’s illness. Because of your grant, Josef was able to take swimming lessons and participate in a gymnastics program. He is so happy and starts speaking about it when it’s time to go. Your organization made a huge difference for Josef. I was so worried the impact of illness and financial pressure would stunt Josef’s development. It’s too easy to get caught up in the stress and unintentionally sidetrack Josef’s needs. Because of you, Josef can enjoy being a kid, try new activities and have some fun. Thank you!

J

We are a military family. My husband is a Marine currently deployed to Afghanistan for 12 months. Our 5 year old son J was diagnosed with autism when he was 22 months. J did not return a smile and did not pick up on social cues like waving. We had him evaluated because he had a language delay. We left that appointment with a diagnosis of autism. It has now been over three years since his diagnosis and J has matured, grown, and overcome so many deficits. When we learned my husband would be deployed for year my heart sank. I immediately began to look for any resource that might benefit J while his Daddy was away. Camp Royall is a summer camp. After researching the camp I knew it would be an amazing experience for J. The need for funding led me to discover ACT Today!. Fortunately we were awarded a $1,500 grant to cover nearly all of Joshua’s camp tuition. This grant has benefited everyone in our family. My husband is comforted to know J is able to experience fun outdoor adventures even though he is not here to take him. I have the added benefit of a week of respite to give some much needed attention to our daughter who often times get overshadowed by her brother. But most of all J gets to have the experience of a lifetime. He gets to spend a week away from home, meet new friends, broaden his life experience, and have fun! What an amazing gift to a boy who faces so many challenges.
I cannot thank ACT Today! enough for awarding my son a grant to get him started with his Naturopathic doctor. He had severe oral sensory issues that caused him to not want to eat….ANYTHING!!! We had therapists coming to the house for over a year, but he did not show much improvement. I could not help but think there were some stomach issues going on that prevented him from wanting to eat. Within 2 weeks of seeing his ND he started eating cheerios and drinking from a cup. Now, 2 months later he looks so much healthier, is trying some new foods and is interacting with people more. If it were not for this support, we would not have been able to get him started with this physician that has helped him tremendously. I can’t wait to see what his future holds.

Thank you,

Zackary’s Mom

Print Friendly, PDF & Email

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.