Millie Mae Raising Awareness of Ataxia.

222K4530 300x199 Millie Mae Raising Awareness of Ataxia.

After speaking with Millie Mae’s father I thought it would be a fantastic to share Millie Mae’s inspirational journey.To help raise awareness of Ataxia.

In February 2010 Millie then aged 8, was diagnosed with Friedreich Ataxia (a rare neuro-muscular condition effecting every nerve and muscle including her heart). Ataxia has no rules with each patient being different to the next. Some can be in a wheelchair from the age of 6 and live to 60 whereas others are not so fortunate.

Millie’s cardiomyopathy (heart muscle thickening) has been classed as severe.

Ataxia means ‘lack of order’. People with ataxia have problems with movement, balance, and speech. Over 10,000 people in the UK have a form of ataxia. 100′s of thousands worldwide. There is currently NO cure.

Millie has to take 1,800mg of Idebenone each day to improve heart function. Idebenone is an anti-aging drug not licensed in the UK . They have to get it shipped from America. In the UK it is used in face creams to reduce wrinkles. If a jar of anti wrinkle cream costs more than £60 it will have Idebenone in it.

While Idebenone does improve heart function it does not stop the muscle thickening. This muscle thickening will continue to get worse.

Millie also suffers from scoliosis -curvature of the spine.Millie also has Pes Cavus, (high Arches) caused by Ataxia . Millie’s feet have not grown in the last 2 years. The arches have grown but her feet have not. Her feet will continue to grow like this until eventually she will need surgery.

Through out all this Millie keeps on smiling. She has her own page that gives you a chance to donate to Ataxia UK a charity very close to Millie and her family. So please if you can donate see the details below.

100% of your donation goes direct to Ataxia UK.

If you are a UK Tax payer Ataxia UK will be able to collect gift aid on your donation.

Just Giving have just introduced TEXT GIVING simply text MILL88 followed by the amout you want to donate . Send your TEXT to 70070 .

Text MILL88£1 to number 70070 to donate £1

Text MILL88£2 to number 70070 to donate £2

Text MILL88£5 to number 70070 to donate £5

Text MILL88£10 to number 70070 to donate £10

www.milliemaesworld.co.uk Visit today and see how truly inspirational Millie really is.

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Comments

lucy says:

April 5, 2012 at 2:03 pm

People like her are an inspiration, never heard of this before, wish her all the best x

- Nick says:
  
  April 6, 2012 at 10:45 pm
  
  Thank you Lucy
  She is an inspiration to us all , I am her father and very proud of her for the way she lives her life through her pain and discomfort with smiles. Her balance and co-ordination is getting worse but she just rights herself smiles then carry’s on ,
  A very proud father
  Nick
  
Alys Jenkins says:

April 5, 2012 at 2:08 pm

Ive never heard of this, but i wish her all the luck in the world.x

Nick says:

April 6, 2012 at 10:46 pm

Thank you Alys

louise says:

October 25, 2012 at 5:11 pm

i have never heard of this before, but the smiles she beams are such an inspiration, you must be so proud =) x

charmaine says:

October 25, 2012 at 8:56 pm

you must be so so proud such an inspiration xx

linzi xdaniel joshuax hogi says:

October 26, 2012 at 5:16 pm

she’s such an inspiration to us all you must be so proud of her xx

natasha holland says:

November 11, 2012 at 6:56 pm

iv never heard of this bfor she is such an inspiration

tina smith says:

December 17, 2012 at 12:00 am

i’ve never heard of this thanks for shareing this to make us aware xx bless her you must be so proud x

steph says:

January 20, 2013 at 9:45 am

never heard of this, but this little girl is amazing. going through so much her self and still wanting to help others x