Help 7 yr old Rikayla Fight Leukodystrophy!
Donation protected
Please read our story about our sweet Rikayla who is now 7 years old. Rikayla was born prematurely and almost immediately diagnosed with developmental delays. This led to the next 3 yrs of her life visiting numerous doctors and being tested for various diseases or conditions....all results were negative with no diagnosis.
Rikayla didn't take her first steps until 3.5 yrs but once she did, it was clear that her balance was severely impacted by her [still unknown] condition. As parents, we have only ever wanted to know her condition to assure we get the necessary treatment to provide her with the longest life span as possible. Over the next 1.5 yrs, more tests and doctor visits but still no diagnosis. At the age of 5 and after a year of fighting insurance, we finally received approval for a MRI. The MRI results suggested leukodystrophy and confirmed microcephaly both of which can severely affect the nervous system. The next natural step is to understand whether it is/isn't leukodystrophy and what can be done about it; however, our health insurance company has denied any further MRI or Genetic testing. They state it is "not medically necessary". How can this be the case when they have never seen my Rikayla who ...
1) Can barely walk without frequent loss of balance
2) Wakes up disoriented most days
3) Can talk but struggles daily with her speech and language
4) Has diagnosed hearing loss
5) Is approximately 2 years behind her current age
Getting this genetic test is urgent for Rikayla, if she does have leukodystrophy it affects the nerves and white matter in the brain. Her potentially fatal condition could continue to decline rapidly. All Rikayla wants to do is sing, dance, and cheer and our wish is to keep her doing what she loves.
All this being said, this GoFundMe is so that we can get the additional MRI, genetic testing, and medical equipment for Rikayla. We cannot do this without support from you. Any amount will help us reach our goal to get this much needed final diagnosis for our sweet Rikayla. Thank you all for your love and support. It is deeply appreciated.
Rikayla didn't take her first steps until 3.5 yrs but once she did, it was clear that her balance was severely impacted by her [still unknown] condition. As parents, we have only ever wanted to know her condition to assure we get the necessary treatment to provide her with the longest life span as possible. Over the next 1.5 yrs, more tests and doctor visits but still no diagnosis. At the age of 5 and after a year of fighting insurance, we finally received approval for a MRI. The MRI results suggested leukodystrophy and confirmed microcephaly both of which can severely affect the nervous system. The next natural step is to understand whether it is/isn't leukodystrophy and what can be done about it; however, our health insurance company has denied any further MRI or Genetic testing. They state it is "not medically necessary". How can this be the case when they have never seen my Rikayla who ...
1) Can barely walk without frequent loss of balance
2) Wakes up disoriented most days
3) Can talk but struggles daily with her speech and language
4) Has diagnosed hearing loss
5) Is approximately 2 years behind her current age
Getting this genetic test is urgent for Rikayla, if she does have leukodystrophy it affects the nerves and white matter in the brain. Her potentially fatal condition could continue to decline rapidly. All Rikayla wants to do is sing, dance, and cheer and our wish is to keep her doing what she loves.
All this being said, this GoFundMe is so that we can get the additional MRI, genetic testing, and medical equipment for Rikayla. We cannot do this without support from you. Any amount will help us reach our goal to get this much needed final diagnosis for our sweet Rikayla. Thank you all for your love and support. It is deeply appreciated.
Organiser
Cary Alan Crosby
Organiser
Thousand Oaks, CA