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It is so important to have a place to stay which is clean, comfortable and homely when you are living your life in hospital.

News   •   Jun 22, 2017 10:04 BST

Mum Lucy with daughters Georgia and Alex.

My daughter was 13 years old when she had her colon removed. Georgia had been unwell for a few days when I took her the doctor. They ordered bloods and other tests and we went home. Over the next 48 hours Georgia's condition deteriorated rapidly, she was admitted to the West Suffolk Hospital and later transferred to Addenbrooke's Hospital in Cambridge.

Very soon we were in a life-changing situation. Georgia was very poorly, in a lot of pain and unable to eat or drink. She was taken to theatre for an endoscopy and colonoscopy and soon after we were told that she had Crohn's disease. Georgia underwent several weeks of steroid treatment and infusions of other medications, but she failed to respond. Eight weeks after becoming unwell Georgia had major surgery to remove her colon. There was no option, and every hope that this would help Georgia get back to some sort of normal life.

Unfortunately, Georgia's case has proved complex, and since her first operation, she has been in and out of hospital constantly. Last October, on her 15th birthday, Georgia was rushed to Addenbrooke’s Hospital for lifesaving surgery. She lost part of her small intestine during this operation.

I needed to be near to my daughter while she was going through all of this. Her condition was such that she needed help to cope with all the emotions and frustrations. Along with her dad, we set about making sure that Georgia would always have someone with her. Also, she needed to know that her older sister, Alex, was close by.

Amidst all the trauma of having a child in intensive care, we were given an envelope containing a key and told we had a room at The Sick Children’s Trust’s "Acorn House".

Acorn House is free ‘Home from Home’ accommodation just a few minutes’ walk from the paediatric intensive care unit and high dependency unit where Georgia was to spend several days. It meant that we were always with her and we, as a family, could remain together.

Acorn House enabled us to try to keep some sort of routine - cooking, eating, sleeping, so that we were there for Georgia. The accommodation was an absolute lifesaver. Georgia became unwell again in March this year and required more major surgery, and once more the charity came to our rescue. We had the security of knowing that we could be by Georgia’s bedside when she woke up – and it was a great comfort for her to know that we were always just a few minutes’ walk away.

Alex and Georgia are very close, we’re all really close – so when one of us is hurting, we all hurt. Fortunately, Alex was granted study leave which enabled her to do revision for her AS levels in Acorn House’s quiet room while I stayed on the ward with Georgia. Then, when I needed to return to the house for a shower or something to eat, Alex would go to be with her sister. It made the situation so much easier for all of us. Alex was a huge support while Georgia was in hospital.

We never knew about Acorn House until we needed it. It was a true lifeline and there’s not enough awareness of the work The Sick Children’s Trust does. It is so important to have a place to stay which is clean, comfortable and homely when you are living your life in hospital.

Georgia is now 15 years old and currently at home. She has a great spirit and when she feels well we make sure we do things as a family - in the recent warm weather we have enjoyed day trips to Felixstowe, and punting with friends in Cambridge.

Georgia's illness has had a huge impact on her life. She goes to school when she can, but has missed out on so much, not least her love of horse riding. We do our best to make sure she studies as much as possible at home and has a tutor visiting to help her keep up.

As we wait for a referral date to see yet another specialist, we are only too aware that we are never far away from a hospital admission, and we may well need the support of The Sick Children’s Trust again.

Throughout these recent difficult months, I have been fully supported by my employers. So much so that they have chosen Acorn House to be the recipient of their current fundraising.

In celebration of 90 years in business, three of my colleagues are doing a 90 mile bike ride to Felixstowe and back (the scenic route!). It is raising awareness of The Sick Children’s Trust, and means that I can give something back to the charity that has helped to keep my family together when we needed to be with each other the most. Donate at CLBR90 £5 to 70070, or visit the Just Giving page at Cecil and Larter 90th Birthday Bike Ride.

Lucy Brentnall,

Georgia and Alex’s Mum.

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