I'm Hannah and i'm two and a half years old and I live in Bolton with my mummy and daddy.

HERE'S MY LIFE SO FAR....

When I was born I had to stay in hospital for 3 weeks.  The doctors said that I had small arms, hands and feet, a cleft palate and hardly any chin.  They also found out that I had 2 holes in my heart, another heart defect and I wasn't able to feed like all the other babies.  Every few days I had to have a tube inserted up my nose and into my tummy so that I could be fed.  I was wired up to lots of monitors too.  Mummy and Daddy were extremely shocked that I had all these problems and very saddened that they couldn't take me home and look after me like all the other new parents were doing.  After being poked and prodded by lots and lots of people, daily blood tests, brain scans and even a trip to another hospital in an ambulance I was diagnosed with Cornelia de Lange Syndrome. 

Cornelia de Lange Syndrome is very rare and has serious physical and developmental implications.  No one can say yet how my syndrome will fully affect me, only time will tell, but It's likely that I may have learning difficulties and autism.  I could develop epilepsy and have behavioural problems such as self injury, I may not be able to speak, I may develop severe gastroesophageal reflux which if left untreated could lead to me developing very serious complications.  I am destined to be very small.  I currently have global developmental delay which means that I'm not developing in all aspects like other average children my age.  For months after my birth I had to have my milk through a tube that went into my tummy.  Then my mummy had to teach me step by step how to drink from a special bottle and teat so that I would be ready to have my cleft palate repaired.

When I was 8 months old I went into hospital to have my cleft repaired.  It was a very worrying time for everyone that loved me and even though the surgery went well, shortly after returning to my room, my throat blocked with blood I stopped breathing and I needed to be resuscitated.  Mummy and Daddy were there with me when it happened and were very very scared that I would die.  When I was eventually discharged home there were times when I would stop breathing in my sleep so I had to have a special monitor attached to my foot which would sound an alarm when I stopped breathing.  I still have a cleft palate because my mouth was damaged when I was resuscitated so sometimes food and drink comes down my nose when I eat and this can hurt.

Because of my syndrome it's possible that I may never be able to talk but if I do have some speech I'll probably have to have more surgery to repair the damage that was done. 

So, as you can see, since I was born i've endured more than many people go through in a lifetime, but despite all the difficulties I still manage to smile a lot!

THE LEGACY RAINBOW HOUSE...

In April 2011 I started to attend weekly sessions at The Legacy Rainbow House in Mawdesley which offers children with disabilities specialist education and rehabilitation therapy called Conductive Education.  This therapy helps children to gain vital independent life skills and reach their full potential.  My parents already pay for me to attend but these sessions may come to an end as we've been told that the charity is running extremely low on funds.  Unless I raise a minimum of £3,000 by April 2012 their services will have to be cut and I won't be able to access the therapy that I so desperately need.

When I first started at The Legacy I could only drag myself across the floor to get around, now I can sit up (when I feel like it), can crawl properly, can pull myself up to stand against something and have started to give a lot more eye contact which helps me learn new things. 

The Legacy has given my family and I hope that I can try to learn to develop new skills like walking and feeding myself.  There are only a few places in the UK which offer this particular type of therapy and it isn't available on the NHS. 

FUNDRAISING....

My family and friends are helping to raise the funds.  In May my Uncle Carl plans to raise money for me by walking the Camino de Santiago which is an old pilgrimage walk and is 800 km from St Jean Pied du Port in France to Santiago de Compostella in Spain.  It'll take him several weeks to do it and we're all very proud of him and grateful for his help (and totally overwhelmed by his kindness!).  However, because the deadline to raise the money is April, we also need your help right now.

Please, please help me to raise this money so that I can continue to attend The Legacy.

HOW YOUR DONATION WILL HELP ...

The money that you donate will go towards helping me receive the ultimate gift that will last me a lifetime...something that many people just take for granted for themselves and maybe for their own children...that's the gift of mobility and some independence.

Thank you for taking the time to read my story.  I know times are hard at the moment so if you can't donate anything at all right now just do me a favour, and every time you see someone who may be 'different' to you, your children or your family and friends, remember they're still people with feelings and just give them a nice smile...it's priceless to that person (and maybe their mummy and daddy too!) and it doesn't cost you any money at all.

Love Hannah

Please consider making a donation from your mobile phone.
Text:  TLRH60 £5 to 70070  (or other amounts £1,£2,£3,£4,£10)

 Update on Hannah's Appeal....

 In July 2012 we were delighted to reach our target of £3000. 

 We would like to thank everyone who has visited Hannah's JustGiving page and contributed to her appeal.  Our thanks go particularly to those who have never met Hannah but took the time to read her story and reached out to help.  We have been overwhelmed by your generosity and messages of support.

A big thank you also to Miranda and the team at The Bolton News for publishing Hannah's story and, of course, to Kat at The Legacy...for all your patience, support and general loveliness...you are amazing!

To Uncle Carl, congratulations on successfully completing your 500 mile Camino de Santiago walk...you have our total admiration for your commitment, selflessness and generosity.  You really are a remarkable man and we're so lucky to have you in our lives. For everything that you sacrificed...thank you, we love you very much!

When Hannah develops a new skill over the next year (and we live in hope that this will include her learning to walk) not only will it be because of her determination to succeed and the work of the wonderful staff at The Legacy but it will be directly as a result of your donation.  Your gift will last her a lifetime and for that we will never be able to express to you all how very grateful we are. 

We will continue to fundraise via this page as we will still need to raise funds for Hannah's future Conductive Education sessions over the years and The Legacy Rainbow House still needs to raise as much money as it can in order to provide support for all the children who need their services. If you would like to contribute, we would, as always, be incredibly grateful.

 You are all wonderful!

 Thank you.

 With love and very best wishes

 Hannah, mummy & daddy x

Thanks for taking the time to visit Hannah's Appeal JustGiving page. Please read Hannah's story here....