Angela and Neil's Eye to Eiffel by Tandem
Neil Osborne is raising money for Annabelles Challenge
Story
Thanks for taking the time to visit our JustGiving page. Our son, Harvey, was born in 2002 and inherited a genetic condition, Vascular Ehlers Danlos Syndrome (vEDS) which has serious consequences for the rest of his life. Harvey's birth mother, Debbie, had the condition but it had remained undiagnosed despite various consultations. The additional strain of giving birth meant that, tragically, she suffered a major arterial rupture and died during childbirth, devastating my world and the doctors were only just able to save Harvey from the same fate.
Individuals with this condition have weakened collagen meaning that Harvey bruises easily and suffers double jointedness. More seriously, like Debbie, he has a heightened risk of spontaneous arterial rupture which can be life threatening. We had our first experience of this last summer when, after moving awkwardly, Harvey reported rapidly worsening pain in his abdomen. Once at hospital they were eventually able to diagnose a Rectus Sheath Haemotoma, an arterial rupture in the wall of his abdomen. The exemplary work of the hospital in Macclesfield and later at Alder Hey meant that they were able to stabilise him, manage his pain and, over time, help him to recover to his usual high spirits. The clot was about 20cm x 8cm x 10cm and it took some considerable time for him to recover.
In addition to vEDS, Harvey also suffers cerebral palsy as a result of the complications during his birth but despite this he always has a smile on his face, has an entirely positive outlook on life and always thinks of others before himself. He is an inspiration to us every day and determined to make the most of the life he has been given. It is Harvey's desire to help others that has spurred us on to raise money for this vital cause recognising the profound effect the condition has on those who are unlucky enough to have it.
We are raising money to support this charity with the twofold aim of:
- Funding research into the condition and ways to mitigate it's effects and avoid others inheriting the condition.
- Raising awareness in the medical community such that the risks in treating sufferers are well know and understood and physicians are on the lookout for the symptoms that indicate a person may be suffering from this condition.
To raise funds, we will be cycling nearly 300 miles from London to Paris totally unsupported over 5 days this summer. We will be riding our beloved semi-recumbent tandem with Angela occupying the front seat normally reserved for Harvey. Every penny donated will go to the charity.
Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos syndrome in the UK. At the heart of the charity is Annabelle, a brave little girl from Bury who is the inspiration behind our challenge to raise awareness and support for patients and families affected by vascular EDS. Vascular EDS is a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Patients are at risk of sudden arterial or organ rupture. Vascular EDS (previously known as EDS Type 4.