Make Each Day Count for Jayline!
Many of us can only imagine what it might be like to face being told your only child at the innocent age of 2 has a terminally ill diagnosis. My beautiful granddaughter Jayline Mayo, mostly known as (Baby Cheeks) lived most of her first year of life as what appeared to be normal. She was meeting most all milestones such as sitting up, crawling, smiling, making normal sweet baby sounds. Approaching her first birthday we noticed she was slowing in achieving milestones, such as walking, her ability to hold things with her hands, and showed minimal interest in toys. At 15 months, she eventually was able to walk several steps but would continually fall. Never have I seen a toddler so determined not to give up fall after fall. Over the course of the next six months Baby Cheeks regressed to the point she could not walk, pick items up, had very little eye contact and most importantly could no longer maneuver food to her mouth and swallow it. Baby Cheeks spent her Christmas in the hospital having a gtube surgically placed for feeding. Through all of this she never gives up and she continues to respond happily to her ALL time favorite movie Moana.
Through several diagnosis, including Leukodystrophy and two trips this year to the Children’s Hospital of Philadelphia Center for Leukodystrophy where they provided further testing which included (WGS) whole genome sequencing. This provided a confirmed diagnosis on June 7, 2018 of Infantile CLN1 Batten Disease. This also is a very rare fatal genetic disease (lysosomal storage disorder) where the cells in the body do not rid themselves of toxins due to a lack of an enzyme, therefore eventually abolishing the cells. There currently is no cure, treatment or trails for this variation of the disease in the US or abroad. The life expectancy for Infantile CLN1 Batten Disease disease is age 5 during which time vision, motor skills and cognitive thinking continues to regress along with severe epilepsy. You can learn more about this awlful disease at bdsra.org.
With days filled with research, phone calls, dealing with insurance companies, therapy, doctor’s appointments, panic, fear, hope, anger, hurt, love, sadness, faith and helplessness while Jac continues to work because life does not pause even with such horrific news. A true roller coaster ride! No parent should ever have to watch their child endure something like this.
With that said it is unimaginable trying to even navigate this process without the strength, love, moral and financial support of friends, family, community and strangers alike. So we need your help in raising funds!
This page is set up on their behalf to raise funds to help ease the financial burden to assist with travel cost to seek education on the disease and looking for a cure. The great need for medical items to assist in Baby Cheeks daily needs that are not covered by insurance, medical treatment not covered by insurance, and to assist them in creating some special memories as a family. All funds will go directly for Jayline (Baby Cheeks).
Time is limited and is so precious, so let’s make every day count! Please give with your heart and help this special little family and our Jayline (Baby Cheeks) seek treatment, memories and a miracle!
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