Beautiful Lily-Mae is a "ray of sunshine."

Curly haired toddler Lily-Mae Fawcett looks like any other cute three-year-old.

Thursday, 6th July 2017, 3:04 pm
Updated Tuesday, 18th July 2017, 8:46 am
Lily-Mae Fawcett, who suffers from Angelman syndrome, with her doting mum and dad, Jenny Mitchell and Jon-Paul Fawcett.

Curly haired toddler Lily-Mae Fawcett looks like any other cute three-year-old.

But the Burnley youngster has a rare genetic condition that affects just one in 16,000 children.

Known as Angelman Syndrome, it is a disorder that affects the nervous system and causes severe physical and intellectual disability.

Lily-Mae with her big sister Hollie, great aunt Kay McKenny and friends Liz Nelson and her daughters Hannah and Heather after the Burnley 10k.

It means that the beautiful little girl may never walk or say more than five words in her life.

The heartbreaking diagnosis is something that Lily-Mae's parents, Jon-Paul Fawcett and Jenny Mitchell have taken in their stride and dealt with in such a brave and positive way.

Jon-Paul (33) said: "Lily-Mae is like a breath of fresh air, a ray of sunshine, she really is our joy.

"People ask how we cope but to us but we feel blessed to have her because she is such a happy, funny and lovely child.

Lily-Mae with her mum Jenny, aunt Kay and supporters at the coffee morning to raise awareness of Angelman Syndrome.

"We feel like the syndrome she has is aptly named because she is like our own little angel.

"She fills our house with laughter and she has made me a better version of myself."

The couple, who live in the Manchester Road area of Burnley, first noticed something was wrong with Lily-Mae when she wasn't developing as most children her age would.

Twenty-four-year-old Jenny said: "She wasn't sitting up or starting to do things like she should.

Lily-Mae with her big sister Hollie, great aunt Kay McKenny and friends Liz Nelson and her daughters Hannah and Heather after the Burnley 10k.

"I kept asking the health visitor about it but I was told that each child develops at their own pace."

It was only when the tot had a seizure that was so severe she had to be placed in an induced coma that doctors realised there could be something seriously wrong with Lily-Mae.

Tests were carried out at the Rainbow Centre at Burnley General Hospital where the discovery was made that Lily-Mae had the syndrome that was first discovered in the 1960s by an English doctor called Harry Angelman.

Symptoms include having difficulty walking as the tendons at the back of the feet are so tight, difficulty with balance and co-ordination, sleep problems and a short attention span.

Lily-Mae with her mum Jenny, aunt Kay and supporters at the coffee morning to raise awareness of Angelman Syndrome.

Another characteristic of Angelman syndrome is frequent laughter and smiling, something that Lily-Mae does constantly.

Jenny, who devotes her time to caring for Lily-Mae and older daughter, Hollie, who is six and Jon-Paul's two sons who are 10 and nine, said: "She is a really happy, bubbly child and everyone falls in love with her because she is so adorable.

"She loves playing and she is so inquisitive about everything.

"Her brothers and sister love Lily-Mae so much and they are so good with her, I am so proud of them all.

"We know she will only be able to say a few words but she can already say mum so who knows what she can learn as she gets older?"

Jenny, who went to the former Edge End High School in Nelson, has been using sign language to communicate with Lily-Mae and the bright tot has picked it up very quickly.

She has also learned where the chocolate drawer is at home and how to reach it by pushing a chair towards it and standing on it!

Jenny said: "She seems like any other child her age, she picks things up very quickly and she can understand us and tell us what she wants and needs.

"The only difference is she can't walk or speak."

Initiallty referred to as "puppet children" because of the jerky movements of their limbs, it later became known as Angelman Syndrome when more and more cases were diagnosed.

In a bid to raise awareness of the condition Jenny and Jon-Paul and their families are fund raising for the charity Assert, the Angelman Syndrome Support Education and Research Trust.

Launched to support the families of people with the syndrome the charity also works to raise awareness of Angelman syndrome and help parents and carers to adapt as situations change as the child becomes an adult.

Jenny's aunt, Kay McKenny, who lives in the Castercliffe area of Nelson, organised a coffee morning and cake sale at Williams House Nursery in the town.

She also took part in the Burnley 10k with her pal Liz Nelson and her daughters Hannah Donnelly and Heather Donnelly-Nelson to raise the grand total of £1,300.

Jenny said they wanted to thank everyone who has supported their efforts as the charity has provided her with a much needed lifeline.

She said: "We have received help, support and information from the charity that has put us in touch with other families going through the same experience as us.

"It has been a great help to me as I can speak to parents who have children older so I know what to expect with Lily-Mae.

"It has helped me to realise that we are not totally alone and prepare ourselves for what may come in the future."

The Barnados charity and Portage, an educational home visiting service for pre-school children who have learning disabilities and additional support needs, have also helped Jenny and Jon-Paul who are making plans to tie the knot soon.

Roofer Jon-Paul, a former pupil of Colne's Primet High School, said: "It makes me feel so sad when I watch Lily-Mae smiling and laughing and I know she will never have a family of her own and a job and all the things you want your children to have.

"But she will always have us, her family who love her and we will give her the best life we can."