This 15-Year-Old with Klippel-Feil Syndrome Must Fundraise to Stay in Her Home

All her life, Caitlin Shaw, a 15-year-old girl in England, has faced a number of serious health problems. She was born with numerous heart complications, as well as Kyphoscoliosis and Klippel-Feil syndrome.
Klippel-Feil syndrome is a rare skeletal condition, which causes abnormal fusion of the spinal vertebrae and neck vertebrae. It can causes distinct physical characteristics, such as a shorter neck, and limits motion. To read more about Klippel-Feil syndrome, click here.

Caitlin was only expected to live a few hours after she was born. She managed to overcome that, as well as four more scares. She’s grown into a teenage girl, and attends a local high school.

This past April, Caitlin’s health took a turn for the worse after a double-pneumonia scare that put her in the hospital for eight weeks. The prognosis was serious; the doctor advised palliative care to focus more on Caitlin’s quality of life and symptoms.

Despite her incredible resilience, both Caitlin and her mother agree that this time feels different. Caitlin’s health has always been complicated, but it’s never been like this.

The doctor advised the family to move into a larger home. Their current two-bedroom place has no bath, and isn’t accessible by wheelchair. Caitlin’s care regimen is complicated. She requires a feeding tube and oxygen tank– equipment that leave little space for anything else in her room. Caitlin’s mother sent an application to West Chestshire homes, which was picked up by Weaver Vale Housing Trust.

After the fighting for another option, the family agreed to renovations. WVHT will begin work on extending the home shortly. The family was hesitant, as this is not the ideal option. Unfortunately, they were unable to find a home that met her health needs. It means Caitlin has to move out of her home for six months. It also means that, although £30,000 of the renovation is covered by a grant, the family must fundraise £10,000 on their own.

The family is stuck in a tricky position. On one hand, they want to spend their limited time being together, not working to organize fundraiser events. On the other hand, if they can’t reach their financial goal, Caitlin will not have access to the care she requires.

Caitlin’s mother has organized a sponsored walk. Caitlin will attempt to stand up from her wheel chair to walk the last mile.

This is a painful and troubling event. Caitlin told the Northwich Guardian she was less nervous than she was scared, “I am scared to have to do that, it makes me annoyed I have to do that.” She also has concerns about what it means to leave her home in her current condition.

The tenancy services manager for WHVT says that the organization is doing everything they can to work with the family at this time.

If you would like to make a donation, the link is available here.

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