Mackayla's Story
“Your child is blind”
Mackayla was born on August 2, 2004 through emergency C-section. On April 6, 2005 Mackayla was diagnosed with a very rare condition called Optic Nerve Hypoplasia (ONH). ONH is a visual disorder that affects the optic nerve that sends signals from the retina to the brain. With ONH, the nerve has not fully developed. This means the child may have some vision or be blind. With Mackayla, she has severe bilateral ONH, she is now and always will be blind. ONH occurs in approximately 7 out of every 100, 000 babies.
On May 4, 2005 Mackayla became apart of a study conducted by Dr. Borchert and his team in Los Angeles, California. The best news was that Mackayla’s vision CAN improve with rigorous therapy. Unfortunately, this therapy is only available in California not anywhere in Canada.
Vision loss is not Mackayla’s only issue; she has a brain malformation causing physical, emotional and behavioral problems.
Mackayla had to have an MRI that revealed that there is an absence of the Spectrum Pellucidum with Hypoplasia. Mackayla has now been diagnosed with Septo Optic Dysplasia (SOD) along with ONH. Some children have unfortunately passed away because of this horrible disease. Now not only is Mackayla blind but she has problems with her brain as well. She was only 14 pounds at 18 months old. Mackayla also needed growth hormone medication. Mackayla’s life now depends upon this costly medication. The cost of the medication will increase the more she grows.
Mackayla has seen great improvements since going to Children’s Hospital in Los Angeles, the only hospital with the ability to help Mackayla. Please read the enclosed information with Mackayla’s story. A trust fund has been designated to help Mackayla to get to and from California each year as well as pay for her costly growth hormone medicine.
We are in the process of booking our flights to L.A California this year. There was a recent publication regarding the study in L.A and all the latest info can be found at … https://pediatrics.aappublications.org/cgi/reprint/121/3/e653
We receive a lot of help and support with the team in L.A
