PKAN is cruel. It robs its victims of their sight, speech, mobility and, eventually and at far too young an age, their life. You can read more about PKAN (pantothenate kinase-associated neurodegeneration) here: http://nbiacure.org/learn/nbia-disorders/pkan/classic-pkan/
Most 9-year-olds spent July playing outside, swimming, and having fun. Riley spent most of July (and all of August, to date) in Children’s Hospital of Denver because his dystonia -- a movement disorder that comes along with PKAN -- became unmanageable outside of a hospital setting. The dystonia is so bad that, on August 7th, it actually fractured the femur (thighbone) in Riley's right leg. In addition to the dystonia, Riley has lost his ability to eat or drink anything by mouth (all feeding is through a g-tube). Riley can no longer walk or run or even play with his friends or little brother, Mason. He has also lost his ability to communicate, verbally and with controlled eye movements. PKAN does not affect his mind -- he is a prisoner in his own body, limited to watching his iPad when he is awake.
And our family is struggling. Riley’s mom, Erin, worked so hard to become a CNA so she could stay home and be his full time caretaker. As long as Riley is in the hospital, though, she is unable to log CNA hours, so she won't received a paycheck. Erin is a single mother of two children. Riley and Mason, who just turned 7. These little boys mean the world to us. Our hearts are breaking.
In posting this fundraiser, I am hoping to give Erin some relief. She needs to be able to focus on her boys, without worrying about whether she will be able to pay her bills. This is where you come in. Can you spare a dollar or two to help this young mother? We can't take away her pain, but we can lighten the load.
Please share Riley's story, donate if you can, and pray for this little family. Thank you, one and all.
As Riley's grandmother, I'll be responsible for overseeing all withdrawals from the campaign to help Erin.
DonationsSee top donations
- 24-7 Restoration Mike Richardson/Paul Porter
- Corey Cannon
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