Louise Prince’s eight-year-old daughter Neve has Angelman Syndrome, a genetic disorder that causes developmental delay and epilepsy among other symptoms.
People with the condition are often seen to be extremely happy and frequently smiling.
It affects between one in 15,000 to 20,000 babies born each year.
Neve was diagnosed at 22-months-old.
Ms Prince, 38, of Alwoodley, said: “We saw numerous doctors and had genetic testing. It took a long time as most doctors may never see a child with the condition.
“The hardest part for me is her having no speech. Not knowing how her day was at school, what she got up to, no ‘I love you mummy’, not telling me what’s wrong when she’s ill.
“All I can go by on her mood is that infectious smile and laughter she has when she’s happy to little miss grumpy pants when there’s something wrong.”
“It can be inherited, but that wasn’t the case with Neve. Unfortunately, it’s like winning the lottery in reverse. It’s sheer luck.
Ms Prince, who has another daughter Lili, 11, added: Most of the time she is happy, but if she’s had a seizure or anything like that she’s still smiling.”
“The diagnosis was very hard to take, very hard. But you just have to accept the new life that you have been given and grieve for the life you had been expecting. I just want her to be as happy as she can.”
Ms Prince is running for charity FAST UK (Foundation for Angelman Syndrome Therapeutics) of which she is a trustee, which funds research but also shares knowledge between families of those affected.
She said: “Building this network of parents and sharing information has been crucial. I’m not sure how I would have coped without it.
“I’m not a runner and it’s been tricky to juggle everything to get the training in, but I hope I can inspire a few other people to help support the charity.”
Ms Prince aims to raise around £1,200 for FAST UK.
Her fundraising page can be found at www.justgiving.com/fundraising/Louise-Prince2
- Thousands of runners are set to take part in the 32nd Plusnet Leeds Half Marathon on Sunday May 14.
The Run For All race, which raises hundreds of thousands of pounds for charity, race starts at 9.30am in The Headrow.
The event’s official partner charities are: Jane Tomlinson Appeal; Martin House Children’s Hospice; Sue Ryder; St Gemma’s Hospice; Forget Me Not Children’s Hospice; Marie Curie; Overgate Hospice; CLIC Sargent, Leeds Children’s Hospital Appeal and Macmillan Cancer Support.
Roads to closed along the 13.1 mile course include Meanwood Road, Stonegate Road and Kirkstall Road. For a full list of road closures, go to www.tinyurl.com/klhamx5