Hollys Story

"Hollys Story" 

In October 2006 Holly went into our local hospital with an UTI infection and the last 10 years seem to have had the snowball effect, as Holly now finds herself not able to eat and TPN dependent.

Holly has chronic intestinal pseudo obstruction (CIPO) and intestinal failure, amongst other issues, and there is no cure for the conditions she has, so we have to try and give Holly the best quality of life and minimise her symptoms and pain. However, in doing this, it has meant Holly has had to undergo numerous trips to theatre, stays in hospital and invasive tests.

Holly now has a Hickman line; this delivers the TPN straight to her heart. She’s attached to a pump which infuses all the nutrients and vitamins that she needs to grow over 14 hours a day. Holly’s digestive system is failing; she is unable to eat and is only allowed a couple of mouthful of dissolvable foods a day. Any more and her digestive system will shut down and Holly will be in a lot of pain and discomfort.

The Hickman line can cause serious life threatening line infections, any temperatures over 38.5 means Holly has to be admitted to our local hospital and IV antibiotics started as soon as possible. This is currently happening on a monthly basis.

Holly has a J-Peg feeding tube inserted into her stomach and small intestine. Holly’s stomach remains on drainage, this is to help with pain and to aspirate any fluids that may be sitting in her stomach and causing her reflux/nausea/sickness and pain. The jeg tube is also there to administer the daily medication that Holly needs.

In 2011 Holly had a Mitrofanoff formed using her appendix, one end is attached to her bladder and the other end to her stomach, we pass a thin tube every two hours down this channel to empty Holly’s bladder. Her bladder has no nerve or muscle control at all. During the night due to the large volume of TPN being administered, Holly has a tube taped in place to keep the bladder empty. Holly has suffered with repeated monthly UTIs which has taken its toll on her kidneys. Her right kidney now only has 18% function left and this will be removed once we get to 15%.

In 2013 Holly had a ileostomy formed, this is where the end of the small intestines is brought to the stomach wall and it’s covered with a bag to collect all the waste products. Holly’s large intestine has failed completely and in the near future Holly will have surgery to have this removed.

Holly has very complex medical needs, she has had far too many hospital admissions, invasive procedures, and days where she just cannot get out of bed. Holly is currently struggling to make it in to school.



So why raise  money for Holly?
Holly, like any other child has dreams and ambitions and with the money that I hope to raise, I plan to be able to help her fulfill some of these dreams.
Holly unfortunately cannot do all the activities most children can do or take for granted, with that money I plan to be able to help her enjoy other activites that she can carry out with specialist training and guidance and that she can cherish and create her own memories for years to come.

Holly is a big 'you tube' fan and regularly updates her own 'you tube' page - "HollyIsNotSmart" - check her out !! 
One of her ambitions is she really wants to meet "Dan & Phil" who are big 'You Tubers' - hopefully we can make that happen for her !! 

I also want to put money towards supporting and funding further testing through the 'Port Charity' to help not only Holly but also the future of others and to raise awareness of this.

I will be posting regular updates on here so you can follow Hollys progress and also keep you up to date on what challenges I will be putting myself forward for to help raise those vital pennies!! 

I will be starting the year and kicking off the fund raising with "Dry January"  then will move on to the London half Marathon on the 20th March ... Watch this space for what else I put myself through as the year goes on! 

Please feel free to message me if you would like to know more about Hollys Story or even if you would like help raise some money for Hollys Story !

Hollys Dad - Chris x