Parents of 11-year-olds with rare condition have hope for recovery after new discoveries.

Harry Simpson and Julie Lalou are filled with hope for a Fragile X cure in the near future, a goal that would have a life-altering impact for their twin sons, Oscar and Freddie. As the parents of 11-year-old boys with this rare condition, they know that everyday milestones that are taken for granted by most families are out of reach for them.

Fragile X is a genetic disorder where a single gene in the X chromosome is shut down, which affects the development of the brain and is associated with conditions such as autism, attention deficit, anxiety and physical signs such as long face, prominent ears and flat feet. The twins were diagnosed at age three and are incredibly sweet and loving boys, although their parents worry about what will happen when they’re not around to look after them.

Harry and Julie responded to the diagnosis by learning as much as they could about Fragile X, flying to the US for answers and setting up tutoring and teaching methods that “bankrupted” them. But the couple’s research has helped their boys remain in mainstream school and develop their own personalities. Freddie loves boxing and sport, while Oscar is artistic and loves make-up and shows.

FRAXA, the world-leading Fragile X research foundation, has raised the prospect that ‘real hope’ is on the horizon for a cure, which would give the boys the opportunity to live independent lives. Katie Clapp, president, co-founder, and Fragile X parent, said that four separate research teams have discovered separate treatment approaches that tackle the root cause of Fragile X. She also mentioned that her son Andy is speaking and thinking more clearly after three months on an investigational new drug, zatolmilast.

Harry and Julie are doing all they can to make Christmas memorable for their boys and three-year-old daughter, Violet. They’ve set up a JustGiving fundraiser for FRAXA, called @christmasonparkroad, and have decorated their front garden in an illuminated Winter Wonderland theme. The couple hopes that a breakthrough will come soon enough so their boys can pursue their interests without them having sleepless nights.

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