Holly's diagnosis and symptoms consist of;
•Chronic Intestinal Pusedo Obstruction
• Neuropathic Bladder
• Right sided Kidney Reflux
• Reduced Kidney Function
• Food Allergies
• Elhers Danlos (awaiting confirmed Diagnosis)
• Hyper Mobility
• Recurrent Infections
• Oesophageal reflux
There is no cure for the conditions Holly has, so we have to try 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, the last time only being last week, stays in hospital and invasive tests.
Holly has a Hickman Line, this delivers the TPN straight to her heart. Holly is attached to a pump which infuses all the nutrients and vitamins that she needs to grow over 14hrs a day. Holly's digestive system is failing, she is unable to eat like me and you and is only allowed a couple of mouthful of dissolvable food 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 into our local Hospital and IVab's started ASAP, currently this is happening on a monthly basis.
Holly has a J-Peg feeding tube inserted into her stomach and small intestines, Hollys stomach remains on drainage, this is to help with pain and to the aspirate any fluids that may be sitting in her stomach causing her reflux/nausea/sickness and pain. The jeg tube is there for me to administer the daily medication that Holly needs.
In 2013 Holly had a ileostomy formed, this is where the end of the small intestines is brought to the stomach wall, it's covered with a bag to collect all the waste products, Holly's large Intestines have failed completely, in the near future Holly will have Surgery to have this removed.
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, Holly's 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 uti's which has taken its toll on her kidneys, her right Kidney now only has18% function left, this will be removed once we get to 15%.
Holly has very complex medical needs she has had far to many hospital admission, invasive procedures and days where she just cannot get out of bed. Currently Holly is struggling to make it into school.
Watching this as her mum is absolutely heartbreaking, yes I can help by adminstering her medication and TPN daily, by being there when she goes into hospital, but the one thing I would really like to do I can't. That's to take it all away and make her better, just like she was before she went into hospital for the first time in 2006.
So now are goal is to put some fun back into Holly's life, far to many days out, Holidays etc have been cancelled due to Holly being unwell or us being in hospital.
This is also very difficult for George and Sophie Holly's brother and sister who have missed out on a lot and also not having thier mum and sister being at home.
Holly has a list of things she would like to do, visit the Pandas in Edinburgh, meet her favourite youtubers (Zoella and the YouTube boy band) go to Minecon 2015 and swim with dolphins in Disney to name a few. I've promised to try to achieve some of these.
So this year along with Michele Jolley I will again be taking part in the London 2 Brighton Challenge in May, if that wasn't bad enough we have also signed up for the London 2 Cambridge Challenge in August, both are 62 mile hikes. Believe us when we say these Challenges are not easy.....eeeeekkkk
We have self funded our places to be able to raise funds for Holly to be able to do and have things that will help and put a smile on her face for a change :)
If you could sponsor us that would be brilliant, if not that please just share this page on your FB or Twitter to raise awareness of these cruel disease and Holly's story
- Lisa Molloy
- sharon Haldane
- Sally Leonard
- Claire Fitzpatrick
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