We are extremely lucky to be supported by some amazing companies and individuals who have dedicated their time and money to help families of children and young adults with undiagnosed genetic conditions.
'We have two amazing children, Henry who is six and Dottie who is four. When Dottie was around one years old we realised she wasn't developing as expected, she also started to have seizures. We felt very lucky that within six months we were being seen by several consultants in different departments at Great Ormond Street Hospital.
When Dottie was around two and a half our genetics consultant told us it was highly likely that Dottie had a genetic condition, probably rare, maybe as yet undiscovered.
Despite all we have been through so far this still came as a shock; it meant she wouldn't just grow out of all of this as lots of friends and family told us to try and reassure us. Finally it dawned on me that this is why all the doctors we were seeing were scratching their heads and not giving us any answers.
It was some time after this during one of my many late night google searches that I came across SWAN UK and realised we were not alone. Just that on its own gave us some reassurance. I've stopped researching on the internet for now as it was not helpful and caused me more worry and sleepless nights rather than providing us with reassurance. Both my husband and I practise living in the moment. We have two wonderful children who are both so very happy and give us so much joy. They teach us more than we ever thought was possible every day.
We don't know what the future holds or if we'll ever get a diagnosis but for now that's fine.
When this year's Undiagnosed Children’s Day came up I really wanted to do something. I organised a "name the doll" competition and I was able to talk about SWAN UK and Dottie to our friends, family, neighbours and school and I was happy for them to ask questions. It felt good to be in that place. I set a target of £100 and raised £700. The response was overwhelming and there was so much love for Dottie from our community.
When Mike's company asked its employees to put forward charities which meant a lot to them, we didn't hesitate to nominate SWAN UK. Mike was able to talk about SWAN UK and Dottie and it was put to a vote with other charities also nominated. We were over the moon when SWAN UK got the most employee votes and was awarded €10,000 from BC Partners.'
We want to say a big thank you to SWAN UK for the support you provide to families like us. Now we are not alone.
SWAN UK still needs your help. The money you raise will make such a difference, for instance by helping us to plan and fund events which will offer a rare opportunity for families to enjoy a day out together and make precious memories. They also give families the opportunity to forge new friendships with other families who understand the challenges of raising a child with an undiagnosed genetic condition.
Companies may also want to get involved by giving a donation to support SWAN UK. Here are some ways your company can do this:
Ask your company if they would like to make a donation or match-fund your fundraising activities – many employers will support fundraising activities undertaken by their staff to support charities and will match £1 for every £1 that you raise.
Payroll giving is a simple tax-effective way for employees to give money to SWAN UK as the money donated is deducted before you pay tax.