Bloom syndrome is a very rare genetic disorder that effects 150 worldwide with only 3 reported cases in the UK.
The condition characterised by short stature and a much greater likelihood of developing cancers tumours. There are many other medical effects of the syndrome, some debilitating and painfull.
Treatment is made more difficult in that the use x-rays can cause chromosome damage, damage that is not repaired as it is with most people. This means that scanning for problems can cause even more damage.
Olivia from Harrogate is aged 7 and has Bloom Syndrome. Olivia lives with her mum Leza Kelly, Dad, James Wightman and her older brother, George who is aged 10.
Due to the genes that Leza and James carry, together they have a 1 in 4 chance of having a child with blooms. Luckily George does not have the syndrome.
Leza Kelly is now crowd-funding to allow her family to fly to America to a Bloom Syndrome Association conference.
Leza said:
The conference is at the end of May and we received an invitation to attend at the end of February. The conference is where many of those with the syndrome come together, along with the experts in the field.
Olivia has never met anyone else with the syndrome.
The family say that the costs around the trip are not something that they can currently afford.
Leza said:
Asking for people to help us towards the costs of the trip is not something that we are doing without a lot of thought.
If we had more notice then we could have got the money together ourselves, just not in the couple of months we have.
We need to raise £2,000 to allow myself and Olivia to go. If we could raise double that then we could take the whole family. Taking the whole family would be so much better as it would then give such a greater understanding of Bloom syndrome to the whole family.
There are also plans for a cake and bake sale on Friday 1 April. This will take place within Herriots restaurant at Harrogate District hospital between 12-2pm.
Leza said:
We would really appreciate all help with donations on our go fund me page.
This is something that would really benefit Olivia and the whole family, but we do understand that we are asking a lot of people.
To support the campaign https://www.gofundme.com/oliviabloomie
