Our daughter Emma was born a "normal healthy"  little girl at 39 weeks. The youngest of 3 she was instantly loved and adored by all. However, it soon became obvious that Emma had some serious health issues and after being turned away from countless hospitals and health professionals we turned to the Birmingham Children's Hospital in sheer desperation. We are outside their area and so we're fully prepared to be turned away. This never happened they welcomed us with open arms and a promise to help if they could. 

Within two days of being admitted to BCH they identified that Emma couldn't feed and needed assistance in the form of tube Feeding. Emma was Nasogastrically tube fed until she was 14 months old when she was fitted with a gastrostomy device. Since then her feeding has gotten even more complicated with a Gastrojejunostomy device feeding straight into her intestines. These have to be replaced surgically at the children's Hospital every few months.

Emma was diagnosed with a rare form of Cerebral Palsy known as Worster-Drought Syndrome. It affects her speech and ability to eat and drink. She silently aspirates meaning that drinking is very dangerous for her. The support and guidance we have received from the staff at the Hospital is second to none. 

To date Emma has had 13 surgeries performed by the Children's Hospital with another scheduled for this week ! ! !  Emma has such a wonderful team supporting her from Surgeon's to Dieticians and everyone in between. 

There is however,  one truly special team involved in Emma's care though and they are her Nutritional Care Nurses,  Gemma and Michelle. These ladies have been our Rock in every storm that's passed. They are a never ending source of support and encouragement for Emma and we simply could not do this without them. 

A few months ago Gemma and Michelle received a similar donation from a family and had some Tubie Bears commissioned. These bears aren't just run of the mill teddies. Each Bear is bespoke made and have all of the medical devices each child may have too from NG tubes to Gastrostomy and jejenostomy devices like Emma's. They can even have Vents and oxygen added too. 

Why do we think this is important you ask? Well because these bears are just like the child they are designed for. That is hugely significant for that child as they don't make a 'Barbie Doll' with a feeding tube or Ken with a Vent. 

Emma was one of the incredibly lucky children to be chosen by Gemma and Michelle to receive a Tubie bear. To date Tubie Bear has had several general anesthetics, far too many cannulas to count and even has his own theater gown. He is totally treasured and vitally important in helping Emma and her siblings understand Emma's care. 

So now we feel it's our time to give something back! ! We would like to raise £350 for the Hospital in Emma's name. This donation will go to the Nutritional Care team to enable them to have some more Tubie Bears made for some more children. These bears do not come cheap so the more we can raise the more children they can send these too so please please donate if you can. 

I will be running the Birmingham 10k in April 2017. Anyone who knows me knows it's been a long time since I ran anything other than a bath. Everyday we watch Emma struggle with all of the things she can't do so if Emma has the courage to go through this journey with a smile on her face then I can do this for her! ! ! ! 

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