My wonderful Mum and I are taking part in the Great North Run to raise money for this amazing charity that has supported us during the toughest of times. Here is our story…

The Sick Children's Trust is a charity very close to our hearts. As some of you might be aware both Esmae and Dexter have spent time at Addenbrookes Hospital which is 60 miles from our home. Esmae was transferred as an emergency in January 2016 & during the two weeks she was in hospital, the Sick Children's Trust provided accommodation for Ryan in Acorn House so that he could be with Esmae and I the entire time. We were so grateful to have use of Acorn House, but we never expected that we would be needing them again - until along came Dexter!


Dexter was born 31st august 2016, all seemed well at birth but within a few hours he was admitted to the Special Care Baby Unit at Ipswich Hospital, where we stayed for 4 weeks. They discovered he had small lungs and was struggling to breathe, so he was put onto Opti-flow (respiratory support). We had good days & bad, the doctors made numerous attempts to get him off the Opti-flow, onto oxygen. Finally he came off the Opti-flow & managing well on oxygen, we were able to take our baby home.


After 2 weeks at home Dexter deteriorated. He was really struggling to breathe, the ambulance came & we were rushed through to Resuscitation in A&E. The bed space was empty then all of a sudden people descended from everywhere. Dexter laid on the bed - grey, lifeless and struggling to breathe. They put him on the Opti-flow and the consultant warned me if he didn't improve in 10 minutes they were going to ventilate him.


Luckily he improved and was moved back to the SCBU. Another week in Ipswich Hospital & Dexter was now 7 weeks so we were moved to the children's ward. There the doctors tried to reduce the respiratory support but it became obvious that he needed extra help, so after 3 weeks in hospital the consultants decided to transfer us to the specialists at Addenbrookes. As Dexter was a high dependency patient we needed a HDU bed, of which Addenbrookes only have 5, so the wait began.
2 days into the wait Dexter contracted Rhino Virus. He deteriorated quickly and the respiratory support wasn't enough so he was ventilated & transferred to the Paediatric Intensive Care Unit at Addenbrookes. Ryan and I followed the ambulance. We arrived at 10.30pm, 30 minutes after Dexter, he looked so peaceful and to finally see him not struggling was a massive relief. The machine was breathing for him so he could put his energy into getting better.

The nurse was amazing & explained everything to us: the machines, the drugs and the plan of action. She also informed me I wouldn't be able to stay with Dexter overnight & handed us a set of keys for acorn house. I hadn't even thought about where we would stay! Once I was happy Dexter was settled we wandered over to Acorn House which was like going home.
Dexter came off the ventilator after 6 days and went back onto optiflow. After 4 weeks of ups and downs, good news, bad news and new respiratory support, both children were diagnosed with Glycogen Storage Disorder. A very rare genetic disorder about which precious little is known and the info available is not at all positive. As a family we have come to terms with this diagnosis & during this time we have come to the conclusion that our children are very special and true fighters.

Living in Acorn House made it possible for us to have Esmae to stay at the weekends, which meant she could spend time with her little brother. She helped bath Dexter and loved getting in his cot to give him cuddles. It also gave us the chance to chat and get to know other parents in a similar situation. It was somewhere to escape to after long days of being on the unit. I could do normal things like cook dinner and put the washing on. I could go to bed knowing I was two minutes away and I could go to the unit at 3am if I needed to. The well-equipped play room meant we could play with Es like we would at home. The staff at Acorn House gave us support on a daily basis and now we feel it's time to give something back.


Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.


Thank you for your support x