Thanks for taking the time to visit my JustGiving page.
Lukas will have his hair cut short on 15th July, the hair will go to the Princess Trust to make a wig for a child with Cancer but the money we raise will go towards The Marfan Trust.
Skye was diagnosed with Marfans when she was 9. This was only found because she had a curve in her spine. They proceeded to run tests on her eyes, heart and lungs. It was found that Skye had a leaking mitral valve, hypermobility and scoliosis. Her lung function was also affected and reduced. In 2015, Skye had an 8 hour operation to perform a spinal fusion as the curve had got to 85 degrees. In 2016, Skye had to have her growth plates drilled to prevent her from growing too much more, she is 13 and at least 6ft 1in. She currently has fluid around her heart and lungs which affects the functionality. As well as long term fatigue, the life of a person with Marfans is a daily struggle.
Skye and her family and very close friends of ours and to see what the family have to go through is heart breaking, if we are able to help towards more research for this syndrome then this will ultimately help Skye.
Marfan syndrome is one of the more common disorders of connective tissue that can affect the eyes, skeleton, lungs, heart and blood vessels, and may be life threatening.
If you are able to help towards this Charity, it would be much appreciated. Any donation, no matter how small, will all help. Thank you in advance.