I wanted to share the story of my dear friends and their daughter, Summie.
Summie is a beautiful, sweet girl who will be turning 6 in February of 2018. A few years ago, Summie was diagnosed with INAD (infant neuroaxonal dystrophy.) This is a very rare genetic disorder that affects the nervous system. The effects it has on Summie are weakening of her muscles, inability to move independently, and cognitive delay. (To read more, please visit: https://ghr.nlm.nih.gov/condition/infantile-neuroaxonal-dystrophy#statistics)
Summie's parents have been dedicated to providing her the best care, and have enrolled her in six therapies weekly, as well as swimming classes, and accupuncture on a regular basis as a means to help maintain her muscle control and physical abilities.
She also has specialized equipment to support her neck and back as well as help her engage in physical activity.
Unfortunately, due to the change in healthcare laws, this year has been especially trying on Summie's family, as the therapies she requires on a regular basis have to be cut down to at least half, so that they can be affordable to continue. Needless to say, with the condition she has, cutting down her therapies to half slows her progress greatly.
I would love the help of our community and friends to help Summie get the therapies and equipment she needs for the next year. The following is the breakdown of her treatment per month:
$1,500/month for a weekly session of physical therapy, occupational therapy, and speech therapy
$150/month for extra neccesities like diapers and wipes, etc.
$80/month for swimming lessons
This monthly total comes to about $1,730 out of pocket. This may or may not include the total costs for Summie's medical needs, but it covers what I know of so far.
Additionally, she is in need of a special supportive back brace and a medical stroller (the cost of which is $10,000, but of which $5,000 is in need of gifting.)
In total, I believe that Summie's family would find great help if they had some monthly support from the community in helping gift for her medical needs.
I would love to help Summie get through 2018 with success and progress and let her parents and family know that they are not alone in helping her achieve her best potential.
Any amount you can gift would be greatly appreciated. It would also be equally appreciated if you could share this with your loved ones!
Thank you so much!
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