Thought I'd share with mom's permission of course this little miracle baby's story...
Shayla, she was born March 11, 2013 unfortunately with an extremely rare disease called Osteopetrosis, in which her bones are extremely solid. This disease causes normal bone growth to be delayed; stunted growth, deformity, her likelihood for fractures increases, and makes her more prompt to anemia and infections. In order for this disease to be cured she would need a bone marrow transplant but prior to that she would have to under go two cycles of chemotherapy for her immune system to be low for the bone marrow to be a success.
She also had a condition of hydrocephalus due to the Osteopetrosis, which cause her brain to fill with fluid and a shunt had to be inserted in her brain. This part of the disease can affect her vision or audio. Unfortunately, it affected her vision causing her nystagmus (involuntary movement of eyes) and strabismus (misalignment of her eyes).
Just about the time her first birthday came around, she had her first round of chemotherapy in March 2014, unfortunately they didn't get a chance to celebrate it! It wasn't until after her bone marrow transplant that she began sitting better on her own & crawling. She is now doing wonderful. She still has some vision problems, slowly but surely it is getting better each day. Now that she's coming up on her 2nd birthday, it will be a big celebration, not just that she is turning 2, but for all the accomplishments she has surpassed on her journey so far! Doctors are optomistic & suspect that her development should be caught up by the time she is 5 year old.
Shayla just loves music, she wiggles & dances along with such a contagious spirit. She is a special little warrior who just required a little extra attention when it came to getting her photos done, so with the help of mom & cousins, I think we did a great job at capturing her shinning personality. She is an inspiration & sign of hope for many who may be facing a similar situation. Loving the attention she gets from her family & friends, she is always such a sweet & loving child, a true beauty in every way! Happy Birthday Shayla!
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