Buxton girl with no life expectancy turns 16

Lola Thomas was born with Kleefstra Syndrome where the tip of her ninth chromosome is missing which has led to medical complications all her life including her needing heart surgery at four-months-old, epilepsy and severe bowel problems.

It is so rare that when Lola was born only 20 people in the world had the condition and doctors told the family she had no life expectancy.

However, she has defied all the odds and on September 13, she turned 16.

Mum Colleen Thomas said: “When doctors operated on her at just four-months-old they said she had no life expectancy at all so we never thought she would be with us for 16 years.

"But she’s still here and she’s happy and smiling.

"We can’t be sad about what we don’t have like planning a sweet 16 birthday party, we are just so glad to have her.”

Lola is both physically and mentally disabled and is a non-verbal teenager but Colleen says she is doing really well at Peak School in Chinley.

Back in 2016, supported by the Buxton Advertiser, the family raised £10,000 to take Lola for dolphin therapy in Turkey to improve her eye movements and help strengthen her muscles.

It worked so well the family had been raising the funds to go again in summer 2020 with flights and a hotel being provided by the Make A Wish Foundation but as the world went into lockdown that plan was shelved.

Colleen, dad Hugh, 12-year-old brother Jude and Lola have moved house to Leek Road recently and Lola’s room is not suitable for her needs.

Colleen said: “We are still in touch with Make A Wish and they have agreed to redecorate Lola’s bedroom and buy new lights and furniture which is nice but she’s a young adult now not a little girl so her room will reflect this.

“As she loves being in the water they offered to buy us a hot tub but we got one last year so we are just getting her room done.”

Lola now has scoliosis which causes problems with her posture but Colleen says she is still happy.

"As she has gotten older we have had less hospital appointments which has been great.

"Me and Hugh are able to tackle most things at home now so we are able to have more family time.

"We went down to Cornwall in the summer holidays and we all had a great time and Lola loved being in the water."

Reflecting on Lola’s birthday Colleen added: “We lived day by day and then the days became months and now we have a 16-year-old.

"It’s a huge milestone for all of us.

"We are never going to celebrate Lola’s birthdays as we would with another young adult of her age but she is here and we are celebrating and I can’t believe she’s turned 16.

"We’ve come a very long way from where we were and we are enjoying every day together.”

The family marked the day by letting Lola enjoy the things she enjoyed most so playing with some of her favourite toys and some lights too.

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