Help Isabella Get Treatment in America
Isabella is a sweet artistic, loving and caring 7-year-old with an extremely rare multisystem disorder – Trichorhinophalangeal Syndrome (TRPS) in Chromosome 8, “it is characterised by thin, sparse slow growing hair, unusual facial features, abnormalities in the fingers and/or toes, and multiple abnormalities of the “growing ends” (epiphyses) of the bones (skeletal dysplasia) especially in the hands and feet”.
It’s been a year since Isabella was diagnosed with TRPS (after years of testing – you can find my story on a public post on my Facebook Profile) and only a few hundred people are documented worldwide with the Syndrome, due to lack of funding little research has been done on TRPS
Please help us raise money to get Isabella and ourselves to America (Rochester, MN Mayo Clinic) for Molecular testing and specialist care to plan ahead for her future.
There is no cure for TRPS, but because of little research done about her condition doctors here in Australia don’t know how to treat her or how to maintain her body the longest before she requires joint replacements.
“The Mayo Clinic in Rochester MN is one of the first central locations for treatment of TRPS patients in the United States”.