The Sunshine Cycle, Run and Shave
Donation protected
In April 2020 Kiara our daughter was diagnosed with Lamb-Shaffer Syndrome and in September 2020 her Granda Sean passed away from cancer.
As June is Lamb-Shaffer Syndrome month Kiara's Dad John is doing a cycle and run on Father's Day June 20th with her Auntie Sharon shaving her head the same day to raise funds for Lamb-Shaffer Syndrome research and The Donegal Hospice.
The cycle route is 112 miles and over 10,000 feet of climbing followed by a marathon that will finish in Ards forest Park.
Kiara is one of 500 reported cases of Lamb-Shaffer Syndrome in the world and the second in Ireland. A relatively new syndrome it was first identified in 2012, it's symptoms include significant speech delay, gross motor and fine motor delay, some visual impairments and under developed optic nerves to name just a few. It's diagnosis can only occur through genetic testing which identifies a variant on the SOX5 gene of the 12th chromosome.
It has been given the name 'The Sunshine Syndrome' by parents as it best reflects the personalities of those with Lamb-Shaffer Syndrome.
The Donegal Hospice are well known in the county for supporting patients and families who have a terminal illness. The staff in The Donegal Hospice are incredible at the passion and care they show to family members and patients over the years is second to none. They offer in unit care, day care and home care throughout the county.
Any donations received will be greatly appreciated and split 50/50 between both charities.
As June is Lamb-Shaffer Syndrome month Kiara's Dad John is doing a cycle and run on Father's Day June 20th with her Auntie Sharon shaving her head the same day to raise funds for Lamb-Shaffer Syndrome research and The Donegal Hospice.
The cycle route is 112 miles and over 10,000 feet of climbing followed by a marathon that will finish in Ards forest Park.
Kiara is one of 500 reported cases of Lamb-Shaffer Syndrome in the world and the second in Ireland. A relatively new syndrome it was first identified in 2012, it's symptoms include significant speech delay, gross motor and fine motor delay, some visual impairments and under developed optic nerves to name just a few. It's diagnosis can only occur through genetic testing which identifies a variant on the SOX5 gene of the 12th chromosome.
It has been given the name 'The Sunshine Syndrome' by parents as it best reflects the personalities of those with Lamb-Shaffer Syndrome.
The Donegal Hospice are well known in the county for supporting patients and families who have a terminal illness. The staff in The Donegal Hospice are incredible at the passion and care they show to family members and patients over the years is second to none. They offer in unit care, day care and home care throughout the county.
Any donations received will be greatly appreciated and split 50/50 between both charities.
Organizer
John McGee
Organizer
County Donegal, Donegal