At the beginning of May 2009 Maddison (then aged 3) became ill, at first with a severe headache that didn't ease with childrens paracetamol so we took her to A&E at our local hospital, while we were there she started being sick, they checked her over (they did all the usual checks but she had no temperature & everything else appeared normal) so as could find nothing wrong we were sent home with the advice that if she got worse to take her to see someone again.

By the next morning she was having trouble breathing so we took her to the minor illness nurse at our GPs again she couldn't find anything in particular wrong & we were sent away again but gradually throughout the day she became increasing breathless, listless & by that evening unresponsive so we took her to a medical walk in centre in our town, the Dr there took one look at her & sent us straight to the children's ward at our local hospital.

Overnight there she was put on a nebuliser & oxygen & seemed to be improving but the next morning as she was sat on my lap she started to panic, I laid her back on the bed & could see she had turned grey & was bubbling at the mouth. The look of fear in her eyes was something that will haunt me forever.

The staff there jumped straight into action (we want to thank them too as we know how much they did for Maddie also & can't fault them in their care of her) as she stopped breathing she was intubated & was moved to the critical care unit but as it is not a paediatric ward she was transfered via the child retrieval team (CATS ambulance I believe, we were in a bit of a state by then so that part is a little hazy) to the paediatric intensive care unit (PICU) at Addenbrookes.

There she was ventilated & sedated but as the sedation was withdrawn they realised that she was unable to breathe herself, she didn't wake up despite not being sedated & they then realised she was also unable to move. They told us she had pnuemonia but said that it wasn't severe enough to be causing so many problems & it was secondary to whatever was wrong, they believed she could have got the pnuemonia from being sick & some going into the lungs. But they didn't know what was causing her not to wake up so did numerous test & examinations & called experts to see if they knew what could be wrong.

They eventually decided it could be a rare condition called Guillain Barre Syndrome but as Maddison was so severely affected they thought it was a more aggresive varient called Miller Fisher. (Guillain Barre is where the immune system reacts to a virus & causes it to attack the nervous system, in Maddison case they never found out what virus & it affected her nervous system so bad it effectivly shut it down) GBS affects about 1 in 100,000 children & Miller Fisher in children is even rarer.

She was started on treatment for that condition but as she was so ill they didn't know if she would ever make a full recovery or even survive!

She thankfully did start to respond to the treatment & began to wake up. It took a long time for her to regain any movement though. She was given a tracheostomy as they didn't know how long she would need to be ventillated for. She also had intense pyhsiotherapy to help her clear her lungs & begin to move. She had a nasogastric tube fitted as she was unable to eat.

Maddison actually had her 4th birthday while still in hospital, the staff at PICU were brilliant & helped make it as special

as possible for her with banners & balloons (secretly put up during the night so they were there when she woke up on the morning of her birthday!) visits for the clowns & PAT dogs & of course cake!! She enjoyed it even though she was unable to open her presents herself (but did get lots of help from her brothers & sister!).

They told us at first she could be in hospital for a year but as she started to improve they brought it down to 6 months then as she was doing so good they told us four months but with her wonderful determination to get better she pushed herself to try new things everyday and all the amazing care, support & encouragement from all the PICU team she was eventually allowed home at the beginning of July after just 2 months!

The staff at PICU not only took care of Maddies medical health they took care of her emotional & mental health too, everything they did for her showed us that they were caring for her as an individual not just a medical case. they personalised everything to meet her needs, to make sure she was as least stressed as possible & they noticed all the little things that mattered so much, like noticing that Maddie improved quicker when she spent time with her siblings so when she was well enough they organised trips out for us as a family & walks around the hospital grounds (with wonderful nurses we can't thank enough!) They all go above and beyond to make sure that the children they treat are given the BEST care available!

They are wonderful and we know 100% they saved our daughters life and we also know there is nothing we can do can to repay that but want to try to show our appreciation in any way we can so by raising extra funds for them we know that we can go a little way to helping them ensure that they can continue to provide the amazing care they do for so many children & they can continue to go that extra mile to make sure that their stay is as stressfree as it can be.

 

The Addenbrookes Charitable Trust has ensured us that any donations you make on behalf of Maddison will be allocated direct to PICU so that they will benefit directly from your generosity.

Thanks for taking the time to visit Maddisons JustGiving page.

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 and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

Update ; For Maddie's 5th Birthday she asked that instead of presents people donate to her just giving appeals! She had a wonderful response, with some making donations online and others giving us cash which we donated to PICU and Maddie was so happy to be able to hand over the cheque to the nurses (as you can see from her photo!) A HUGE thank you to everyone who has donated on Maddie's behalf, it means so much to all of us! X