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April Grisham

Lebanon, TN

Entry Photo for April Grisham - Lebanon, TN

Hi, my name is April. I am writing to tell you about my 5 yr. old daughter Shae. She is my HERO! She was diagnosed with a rare genetics disease called Pompe. It affects all of her muscles even her heart. She was diagnosed at 14 months and has been getting enzyme replacement since. She has never been able to walk, She has a permobil chair that she got about 3 months ago and she absolutely loves it. The only problem is we don’t have a way to get it any where. She gets to use it inside the house daily but can’t take it to school because we don’t have a way to get it to and from. I know that if she could get her chair to school she would interact more with the other kids and love the extra freedom and mobility. We also have to go to the childrens hospital every other Monday for an infusion that she requires to stay alive, not to mention all her therapies and other appointments and check ups in between. We have to haul all her things (trach kit, vent, diaper bag, and not to mention whatever eles we may need) one person totes all the bags and the other carries her.Right now we drive a small vehicle that is so hard to ride in with the whole family and the nurse has to ride in the front which makes it hard for her to get to her to suction her or anything. Our family can not afford to get a new vehicle at any time and I really don’t know when we would be able to, to be quite honest. If we could take her chair with us when we go shopping and things her life would be so much better. And as her mother I would like for nothing more than to make every aspect of her life better. She also has a brother that is almost 8. He would love for her to be able to get out and go to the park and have some freedom to roam with him. I hope that we win a new van, that would be such a great blessing for Shae and our family. But I really wanted to share her story and enlighten people about pompe disease, and maybe spread a little awareness. thank you for letting me share.