Alison Meserve and her mother, Leslie, are very pleased at the arrival of a $25,000 custom wheel chair, made possible by a Choices For Independence provider. It arrived in time for Alison's 25th birthday. Merle Taylor, RN, Long Term Services coordinator for the nonprofit Granite State Independent Living Organization, stands to the side, smiling behind her face covering. (Photo by Elissa Paquette) (click for larger version)
May 28, 2020TUFTONBORO — Alison Meserve exited her home down the wooden ramp, built by members of the First Christian Church of Wolfeboro, seated in her new $25,000 custom wheelchair for an interview. Alison has Ehlers-Danlos Syndrome (EDS), a rare disease, typically difficult to diagnose, that weakens the connective tissues of your body. Alison and her mom and dad have travelled a long road together since her symptoms manifested at the age of twelve.
"She was such a healthy kid," says Leslie, "but one day she came home from a sleepover and told me, 'It hurts when I swallow.' That kicked off the nightmare. She experienced tremors, pain, digestive issues... We took her to a number of leading hospitals, but for eight years we had no answers. She was just dissolving before our eyes."
Her hip joint could pop out just from turning in bed.
Over the years, Alison has had costochondritis, chest wall inflammation that made breathing without pain difficult, leading eventually to a double mastectomy at the age of twenty; gastroperisis, shut down of the digestive system; and postural orthopactic tachocardio syndrome, which Leslie says wrecked havoc with her blood pressure and heart rate.
Leslie says that Alison's physical problems began to improve once neurologist Dr. Khosro Farhad of the Wentworth-Douglass hospital network made the EDS diagnosis and Dr. Juan C. Perez , specialist in Physical Medicine and Rehabilitation in Somersworth, was able to treat her pain.
Two days before her 25th birthday, May 17, a custom hospital bed was delivered to the house. For the first time she could maneuver herself into more comfortable positions. And then, the custom wheelchair was delivered.
It's been a lonely journey over the years, says Leslie, but help has arrived for her "sharp, funny, happy" daughter who experiences pain "around the clock." A connection with the nonprofit Granite State Independent Living Organization, brought Merle Taylor, RN into their lives as Alison's Long Term Care Coordinator. Taylor allowed Alison to get a consumer directed program, which made her eligible to hire, train and supervise her own staff. Alison then hired her mother, which enables her to be paid for 40 of the hours a week she attends to her daughter.
That, too, has made a big difference in the family's life. Taylor says another organization, a Choices for Independence provider, helped facilitate obtaining Medicaid funding for the wheelchair and is now working on funding for a Stair Glide.
The increased mobility is a boon for Alison. Leslie now envisions getting a handicap accessible van and driving her daughter to appointments in relative comfort. All the changes combined off huge relief.
Adversity is harder to bear when support arrives.
Alison's eyes light up when she talks about the car parade that took place on her birthday – the signs, the familiar faces all parading by. Life is definitely looking up.