Our daughter Amelie hasn't had the easiest of starts! Diagnosed with a severe cleft of the soft and hard palate five days after her birth (after it being missed on several occasions and her not being able to feed) we were thrown into the world of clefts and referred to GOSH. For the first few months of her life we were in and out of hospital for hearing tests, a very thorough eye test, several overnight sleep studies and various appointments to meet the many people involved in her care. It was overwhelming at points (and still is!) but we always felt supported and looked after. 

Amelie had her first surgery at the of 11 months and unfortunately this was only partly successful and they were unable to create a layer of muscle in her palate, something that is crucial to speech. It is likely she will need at least one more surgery to ensure she is able to speak properly and be understood by those around her. We have started signing and she is now starting to use this to help her communicate, as she is not attempting to speak at the moment. She was also diagnosed with conductive hearing loss in both ears and wears a bone conduction hearing band to help her hear as much as possible.  

During all of this there have been times when we have felt scared (nothing can prepare you for having your baby go under general anaesthetic in your arms and handing them over, knowing they will experience major surgery and pain afterwards), overwhelmed and the effect it has on all of us has been significant. I have recently stopped working so that I can give our little girl the time and support she needs, including full time signing and attending appointments. However, at the forefront of all of this has been GOSH and their amazing staff. They really care and during appointments answer our many questions. 

The next step for our brave, independent and incredibly strong girl is speech and language therapy. This will mean assessments and then more than likely regular appointments, where they will decide if she needs further surgery. More surgery is looking very likely as her speech is very delayed and this will hopefully help give her the 'tools' needed to help her progress. As much as I dread the prospect of further operations I know she is in safe hands and if it helps her in the long term we will stay strong for her. 

We are incredibly lucky to be under the care of one of the best hospitals in the world and we know that as long as Amelie is under their care that she will be okay and has a bright future. It is not going to be one without its obstacles but her relationship with GOSH will go into her early twenties so we are in safe hands for many years to come.

Completing this half marathon will be a huge challenge for me personally as I have never run this distance before and it will take some training to get confident and ready for this event. Having the support of our family and friends will help spur me on and knowing I am helping the hospital to continue the amazing work they do every day, looking after and supporting the young patients and their families, will make it totally worth it.

* Since I originally wrote this Amelie has had a second surgery, has undergone intensive speech therapy and is now under investigation with the genetics team and paediatrician. It is looking likely that Amelie will need to go to a specialist unit for at least the start of her school career so we are in the process of applying for an EHCP for her. It is tough going, but if it means Amelie receives the support she needs and deserves, it will be worth it. At the forefront of all of this is GOSH and we seem to be there a lot at the moment! They continue to give us amazing care and support and although I am worried about what the next few months and years will entail, I know we are being looked after by an amazing team and hospital. 

Every child deserves the chance to reach their potential. Your donation will help to fund ground-breaking research, advanced equipment, child and family support services, and the rebuilding and refurbishment of wards and medical facilities.

Every day brings new challenges at Great Ormond Street Hospital (GOSH).Every day, 618 children and young people from across the UK arrive. Every day, doctors and nurses battle the most complex illnesses, and the brightest minds come together to achieve pioneering medical breakthroughs.And every day is a chance for you to make a difference. This extraordinary hospital has always depended on charitable support to give seriously ill children the best chance to fulfil their potential.A better future for seriously ill children starts here.

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