LITTLE Gracie Mellalieu shouldn’t have much to smile about.
The three-year-old from Buckley suffers from Morquio syndrome – a life-threatening disease that stunts growth and limits her ability to walk.
This type of dwarfism is so rare that only 3,000 people in the world have the same condition.
But despite her illness, bubbly Gracie is full of life.
Here, parents Yvette and Jonathan recall the moment their world fell apart.
“I was devastated,” said Yvette, 31, of Brickbarn Close.
“We first noticed something wrong when Gracie was developing an misshapen chest. She had some tests and then we were told it was Morquio syndrome. It came as a big shock.
“My husband and I are recessive carriers of the gene and had no idea until we had Gracie. You can’t help feeling partly responsible. There is a one in four chance that our next child will also suffer with the same disease.”
Morquio syndrome means the youngster is unable to break down sugar molecules in her body which build up in her spine.
Gracie, a pupil at First Steps nursery in Alltami, will undergo life-changing surgery in November to ease her condition.
“She can’t walk very far at all,” said Yvette. “She’s not going to grow very tall and has got limited mobility. Her neck can be quite unstable.
“We’ve fitted a handrail to help her up the stairs but if she falls it could paralyse her or even kill her.
“She will have spinal fusion surgery where they take a piece of her skull out and fuse it to the top of her neck.”
But Gracie does not let her condition get her down.
Yvette added: “She is extremely bubbly and she loves life. She gets excited about absolutely everything. She loves spending time with her family but she knows her limitation.”
Meanwhile, Gracie’s uncle Daniel Rowberry, 20, and a pal are walking from Mold to Cardiff to raise funds for The Society For Mucopolysaccharide Diseases.
The 150-mile journey is expected to take them a week with the brave pair roughing it at night and camping wherever they can pitch their tent.
“We will be walking with them for the first mile and then saying goodbye,” said Yvette.
“They want to raise as much money as possible for the charity. It is such a good cause and they are doing excellent research into MPS.”
Go to www.justgiving.com/MASBAW to donate.
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