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Lyla James, A Brave Little Island Girl in Need of Support

With a spinal surgery next week, Lyla James and her family are reaching out to the island for support and aid.

 

Lyla James was born seven weeks premature at Tufts Hospital in Boston after her mother spent eight days in labor, finding out only a week before that Lyla had a heart defect called Critical Pulmonary Stenosis that required a simple heart procedure called a cardiac catheterization.

After she was born, weighing 3 lbs 14 oz, Lyla underwent the procedure at Children's Hospital Boston, which caused her to go into cardiac arrest for half an hour, also triggering a brain hemorrhage in the back left lobe of the brain.

When her parents, Raleigh and David, finally made it to the hospital, she was completely unconscious, intubated, jaundiced, her left side was purple due to lack of blood flow, and she faced the possibility of foot and hand loss. Slowly, she began to work her way "out of the woods" and wake up. Lyla underwent the same procedure a week later - this time without a hitch.

Lyla spent the next five weeks in Children's Hospital eventually moving from the Cardiac Intensive Care Unit, to the NICU, where she learned to bottle feed by ripping out her own feeding tube, and was held by her father for the first time. She began steadily gaining weight and moved down to the Cardiac Step-Down Unit, where she was sent home weighing a little over 5 lbs and very fragile.

Her heart still wasn't completely fixed, and she would undergo three more cardiac catheterizations until her family and cardiologist agreed that they were not serving their purpose, and she underwent open heart surgery in July of 2012. Everything was going well until mid-January, her parents noticed that Lyla had began walking tippy toed, with the foot inverted, on her right foot within a matter of days.

By the end of the week, Lyla-James and her parents were on their way back to Children's Hospital where Lyla underwent a series of tests to discover that she has something called a Tethered Spinal Cord. Surgery was planned for the Thursday of the following week, yet her parents discovered that the insurance company didn't approve the surgery.

The family went home and returned the following Tuesday to meet with a new neurosurgeon who scheduled surgery for February 8, 2013. The surgeon told Lyla's parents that the spinal cord is not what was affecting her leg - it was the brain hemorrhage that occurred at birth. Now Lyla needs to meet with neurologists to determine what should be done about her brain damage, because she is otherwise your average, happy, intelligent, 2 1/2-year-old.

The James family has  a long road ahead of them, including a daunting recovery of five days of Lyla laying flat on her back to allow the spinal fluid to form back around her spine.

While both parents work, (David works for Raleigh's father at W.H. Russell; and Raleigh is manager at Tea Lane Caterers, Inc.), both parents will need to take time off to care for Lyla and the cost of traveling is beginning to take its toll. A third party, tax exempt, and tax deductible account has been set up for the family to help aid with travel costs, groceries, and utilities. 


If you would like to donate, please write a check out to:


You've Got A Friend
PO BOX 1317
West Tisbury, MA 02575


Note: On the envelope as well as on a sticky note on the check, please include c/o Lyla-James and Family. Please, do not write anything in the memo note on the check.


Any and all gift cards can be mailed to the same address.

kristie January 28, 2013 at 03:23 PM
Beautiful little girl who has been through way to much at such a your age. She has great parents that are always by her side and pick up on something that is not the norm for this little princess. God bless Lyla you have been in my prayers since the day you were born. Lyla has the most beautiful smile god bless Lyla and her parents <3<3<3
sharon January 29, 2013 at 07:05 PM
Explain the situation to the church a block or so up,from the ferry. I think it was a methodist church on the right hand side a little ways up a side street coming from the boat. Sometimes in the winter mos. they will,allow,unto,park,for free and just ask for a donation if possible to,the church. If you have a car on each side it will save you the travel on the boat some. just a short walk down the grassy hill and you can grab shuttle that drops off people going to,their car so you dont have to walk down the street. It worked great when my husband had to go back and forth to Dana Farber. sharon klein
Angela Dion January 29, 2013 at 10:33 PM
I am wondering if there is any other assistance which could be provided to the family (aside from monetary)?

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