Millie has Metachromatic leukodystrophy (MLD) which is a genetic disorder caused by a deficiency of the enzyme arylsulfatase A. It is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty covering -which acts as an insulator – on nerve fibers in the brain.
There is Treatment available in north Carolina that has been proven to be beneficial in number of MLD patients, however the cost for this treatment is £380,000.00.
**Update Doctors in Holland have offered this treatment for £200,000.00, but we’ve still got a long way to go, please help if you can***
http://www.helpmillie.co.uk/index.html
About Millie
Millie was born on the 29th April 2004. Millie learnt to walk at 16 months and as soon as she was able to walk she was pushing her doll’s pram and has continued to do so since. Millie loves playing with her doll’s and role-play.
Millie’s favourite things:
Millie from as young has I can remember has loved dressing up and role-play.
Millie is quite content just playing on her own, she enjoys playing with her doll’s.
Millie loves playing in the garden, playing in the sandpit and playing in her playhouse.
Before diagnosis:
Millie enjoyed playing on her scooter and was improving. She would scoot to school every day and her skills and strength on the scooter was improving.
On weekend’s Millie would go on her bike with her dad even though it was difficult for Millie to peddle for long, it seemed she was improving.
Millie loved going to Gambado’s and Activity Land and still does, but is very wary and tends to play on her own now as she seems aware that she is not has active as the other kids and is afraid of been knocked over. She doesn’t say this but her behaviour has changed and she seems aware of her difference’s to other kids.
Millie’s favourite TV programmes:
Millie has a toddler enjoyed watching Fifi, Dora and Pepper Pig. Millie still enjoy’s watching these programmes. Millie also likes High School Musical & Hannah Montana.
Millie’s favourite music
Millie likes Justin Bieber and Rihanna
Millie’s favourite movies
Alvin and the Chipmonks
Princess and the Frog
Disney Princess
Millie’s holidays
Millie loves holidays most of all and enjoys going to Devon.
Millie loves going to the beach and collecting sea shells, and paddling in the
sea and making sand castles. Her biggest wish is to go to Florida and visit the
Disney Princess’s castle and swim with the dolphins.
Millie loves the summer and hot weather and plays for hours on end in the
garden. Millie never liked swimming until one year when she was four we
were on holiday in Devon and took her swimming and have never looked
back since.
Swimming is one of Millie’s favourite things!
Millie’s favourite food
Millie love’s Pie, Chicken Nuggets, McDonalds, Cheesy Pasta.
There is Treatment available in north Carolina that has been proven to be beneficial in number of MLD patients, however the cost for this treatment is £380,000.00.
**Update Doctors in Holland have offered this treatment for £200,000.00, but we’ve still got a long way to go, please help if you can***
http://www.helpmillie.co.uk/index.html
About Millie
Millie was born on the 29th April 2004. Millie learnt to walk at 16 months and as soon as she was able to walk she was pushing her doll’s pram and has continued to do so since. Millie loves playing with her doll’s and role-play.
Millie’s favourite things:
Millie from as young has I can remember has loved dressing up and role-play.
Millie is quite content just playing on her own, she enjoys playing with her doll’s.
Millie loves playing in the garden, playing in the sandpit and playing in her playhouse.
Before diagnosis:
Millie enjoyed playing on her scooter and was improving. She would scoot to school every day and her skills and strength on the scooter was improving.
On weekend’s Millie would go on her bike with her dad even though it was difficult for Millie to peddle for long, it seemed she was improving.
Millie loved going to Gambado’s and Activity Land and still does, but is very wary and tends to play on her own now as she seems aware that she is not has active as the other kids and is afraid of been knocked over. She doesn’t say this but her behaviour has changed and she seems aware of her difference’s to other kids.
Millie’s favourite TV programmes:
Millie has a toddler enjoyed watching Fifi, Dora and Pepper Pig. Millie still enjoy’s watching these programmes. Millie also likes High School Musical & Hannah Montana.
Millie’s favourite music
Millie likes Justin Bieber and Rihanna
Millie’s favourite movies
Alvin and the Chipmonks
Princess and the Frog
Disney Princess
Millie’s holidays
Millie loves holidays most of all and enjoys going to Devon.
Millie loves going to the beach and collecting sea shells, and paddling in the
sea and making sand castles. Her biggest wish is to go to Florida and visit the
Disney Princess’s castle and swim with the dolphins.
Millie loves the summer and hot weather and plays for hours on end in the
garden. Millie never liked swimming until one year when she was four we
were on holiday in Devon and took her swimming and have never looked
back since.
Swimming is one of Millie’s favourite things!
Millie’s favourite food
Millie love’s Pie, Chicken Nuggets, McDonalds, Cheesy Pasta.
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