Isla Alford is a little angel suffering from a rare genetic disorder who smiles through continuing hospitalizations since she was born last May.
Great grandmother Marsha Warner of Ripon is raising funds for her youngest granddaughter through a fundraiser she started after the death of her husband in early January and through a GoFundMe Account that was started by a friend of the family.
Isla currently remains hospitalized at the Kaiser Pediatric ICU Hospital awaiting a flight back to Philadelphia Children’s Hospital for surgery on her left rib cage to allow her to breathe better.
Isla’s battle with Jeune Syndrome is requiring multiple surgeries at the Philadelphia Children’s Hospital working to correct the effects of the disease that causes shortened bones in the body and often disables the diaphragm that controls the body’s natural breathing.
Both fundraising accounts have an average of $9,000 each in them but just the round-trip cost of the air ambulance is some $86,000 plus hospital costs that aren’t totally covered by insurance with a $12,000 annual co-pay.
Mom Rachael and Dad James along with friends and family members take turns being with Isla when she is in the Oakland Children’s Hospital. Her parents take time off work when she is flown to Philadelphia for the Petr surgery. It is scheduled this month on March 18. Her first surgery was on Dec. 6 after being flown to the east in November. Philadelphia Children’s Hospital is the only facility that specializes in treating the syndrome, Warner said.
Isla wears a Bi-Pap mask to help her breathing, her grandmother explained and has to be checked by doctors every four to six months with the ribs having to be tweaked with her growth rate several times a year until she reaches the age of 15, according to Warner. She has had the right side of her body corrected first and now the left is set to be corrected later this month. She currently has to be fed through tubes into her nose, she added. Mom is a speech therapist in Antioch and constantly talks to her daughter, keeping her attention active and happy.
Her mom has to keep working in order to keep their health insurance coverage active. She drives to work, then to the hospital after work to be with her daughter and see that she is settled in for the night before returning home.
Little Isla never stops smiling and even holds a children’s book twice her size, opening and closing the back cover cooing as it hits her lightly in the head bringing a bubbly laugh as she appears to think it’s funny as seen on a cell phone video. She has learned to blow bubbles out of her breathing mask and giggling at the same time as though she didn’t have a care in the world.
The GoFundMe Account can be accessed by adding “Help Rachael Alford and Baby Isla.” Any additional donations will go toward the parents’ travel expenses and hotel costs both in Oakland and in Philadelphia.
To contact Glenn Kahl, email firstname.lastname@example.org.