Family fight to save daughter Maha Asghar's smile
A Manchester family are rallying support to save their daughter's face with a pioneering US procedure.
A year ago, three-year-old Maha Asghar was diagnosed with Parry-Romberg syndrome, a rare facial disorder affecting one in a million people.
The disorder means her immune system is turning on itself and beginning to destroy her face.
The family have been fundraising to find the £70,000 needed to stop the toddler's smile from sinking away.'Unbearable pain'
End Quote Shameem Asghar Mother
It's quite hard watching and knowing what could happen”
Her mother Shameem Asghar said: "At the moment it's affecting her eyesight and that's my main concern because it can leave her without vision.
"It's just wasting the bones, it's wasting away the tongue and the gum and it's causing a lot of damage just behind her ear which can affect her hearing.
"She can have episodes of pain that can last two to three hours and it's unbearable pain.
"It's quite hard watching and knowing what could happen. It's like we're on an emotional rollercoaster."
In the UK, the NHS only offers cosmetic surgery when she turns 16, but her family think that will be too late and want to send her to the US.
At the University of Wisconsin Hospital, Dr John Siebert, professor of surgery, is pioneering early intervention where microsurgical reconstruction repairs the deformity and is believed to slow or even stop the disease.
Parry-Romberg syndrome, also known as progressive hemifacial atrophy, is the progressive shrinkage and degeneration of the tissues beneath the skin, usually on only one side of the face.
It can lead to loss of sight, severe pain and seizures and there is no known cure.
Dr John Siebert's procedure
- The surgery involves taking tissue from an area of the body and transplanting it into the face
- He has spent 20 years perfecting the procedure that not only repairs the deformity but may change the biology of the disease so the progression is halted
- He has performed the special type of microsurgical reconstruction on about 120 people with Parry-Romberg syndrome
The family, from Oldham, set up the Maha Appeal two months ago and have already raised £50,000 through events and fundraisers in the hope of sending Maha for surgery by May.
Shameem Asghar said: "At the moment [the NHS] are offering to put her on the drug Methotrexate. The side effects can affect her kidneys, can even end [her] life.
"She is going to look abnormal, she's probably going to have to go through the best years of her life feeling different to everyone else.
"As a mother I have to weigh up my options on what is best for my daughter, not what comes free for my daughter.
"My concerns are what tomorrow [will] bring and what she will go through, what she will deal with at such at young age."
There are thought to be 750 sufferers of Parry-Romberg disorder in the UK.