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“Every parent’s worst nightmare”Leni suffers from incurable dementia – at just two years old
Little Leni suffers from childhood dementia.
GoFundMe/Emily Forrester & Angus Forrester
Her parents are fighting for their little angel!
Little Leni (2) is growing up like a normal child. Smiles, plays, cuddles with mom and dad – but she will forget all these beautiful memories again. Because the girl suffers from incurable dementia.
Leni suffers from rare childhood dementia
It was only shortly before her second birthday that doctors discovered that Leni had a rare hereditary disease and diagnosed the so-called Sanfilippo syndrome – better known as childhood dementia. Because of the disease, their daughter will “lose the ability to walk, talk, play, laugh, eat and ultimately her life,” Emily and Angus Forrester of Kent, England, write in one Call for donations. Life expectancy is around 12 to 15 years. “It’s every parent’s worst nightmare to find out their child is going to die.”
Leni's parents collect donations for experimental therapies.
GoFundMe/Emily Forrester & Angus Forrester
One piece of bad news is quickly followed by another. Emily is pregnant and undergoes a painful test to find out whether the embryo also has childhood dementia. There was only a 25 percent chance of this happening – yes “Unfortunately the baby was also diagnosed with Sanfilippo, so we had no choice but to terminate the pregnancy”writes the British Mirror.
The Forrester family is raising funds for treatment
Despite such severe blows of fate, Angus and Emily fight for their Leni. The two have already raised more than 400,000 euros and want to use it to pay for one of the “promising experimental treatments” that could make the difference between “a potentially normal life and a greatly shortened life with severe mental and physical disabilities.” It is a “race against time” to gain the all-important access to treatment.
Leni and her parents choose to go public, appearing on talk shows and telling their story to British newspapers. They want to raise awareness for the rare disease – and thus save the lives of their daughter and other affected children.
