Gresham youngster battling rare illness takes first steps
PUBLISHED: 16:39 02 March 2011
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A toddler who has been battling a rare illness has reached another milestone after taking her first steps on her own.
Angelina Mills, from Gresham, who is now just over 18 months old, suffers from a rare condition called sturge-weber syndrome, which left her with a port wine stain on her face, epilepsy, bodily weakness and learning delay.
In a bid to stop seizures caused by the epilepsy, her parents, Lisa Massingham and Stephen Mills, were told by specialists at Great Ormond Street Hospital that the best chance was an hemispherectomy operation, which involved disconnecting the outer layer of the affected right half of her brain.
The couple made the difficult decision to press ahead with the operation, which took place in June last year.
And it is proving to have paid off – with Angelina taking her first few steps on her own over the last few weeks.
Ms Massingham said: “At Christmas time she had started saying ‘dadda’, now she is saying ‘mamma’ as well. There have been a lot of improvements. She has been walking around furniture to get herself along, but about three weeks ago she managed to push herself up with her right hand and stand without wobbling. Now she has also taken a few steps on her own as well, from one end of the lounge to the other.
“It is wonderful, there was a time when we did not think we would see her take her first steps or say mummy or daddy, so to see and hear it is just fantastic.”
The youngster is also set to undergo laser treatment at Great Ormond Street in April to help reduce the port wine stain on her face.
Ms Massingham said; “The hope is that the laser can reduce the colour of the mark by 80-90pc, they do not believe it will go completely but the aim is also to stop it going darker when she gets older.”
But a routine test the hospital carried out recently has also shown some jerking movements Angelina makes when she is relaxed and the hospital is investigating further.
Ms Massingham said: “We know she has a lot of problems and it does get more difficult to deal with as she gets older.
“But she is a really determined little girl and that is the good thing, that is what is going to help her as she gets older.”
Over time the other part of Angelina’s brain should begin to do the work of the disconnected part but she will need up to five years rehabilitation including physiotherapy occupational and speech therapy.
As well as having raised money for Great Ormond Street, Angelina’s family and friends have also raised £8,000 to help create a sensory room for Angelina at their home, which they hope to build this year.
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