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Doing Something for Rachael
£1,730 Raised
173% of £1k goal
62 contributors
2 Years running
Many of you reading this will have met or know my incredible friend Rachael. Rachael and I met aged 11 at secondary school, a keen ballerina, Rachael was also extremely bright and hoped to eventually study at Oxford or Cambridge. Despite having ... More ...

Many of you reading this will have met or know my incredible friend Rachael. Rachael and I met aged 11 at secondary school, a keen ballerina, Rachael was also extremely bright and hoped to eventually study at Oxford or Cambridge.

Despite having a growth defect that meant she was small for her age, Rachael let nothing stand in her way and had a real zest for life.  

However in 2001, aged 16, Rachael was diagnosed with the degenerative condition of the bowels known as chronic intestinal pseudo-obstruction.  The muscles throughout her bowel did not work and so peristalsis did not occur.  This meant she could no longer have any food or drink orally and instead had to be fed intravenously (TPN)

For 11 1/2 years she endured life not able to eat and being totally dependent on TPN for all her nutritional requirements.  For anyone not familiar with TPN - this involved her being hooked up to a drip for 12 /14 hours at a time, meaning she missed out on a number of things "normal" teenagers/ young adults would get to experience.  Independence, University, evenings out with friends even something as simple as a sleepover.

During this time her condition deteriorated, she suffered debilitating abdominal pain and sickness.  She was dependent on strong painkillers and anti sickness medication. 

The TPN  also had increasing complications over the years, with Rachael experiencing many serious sepsis episodes, damage to her liver, kidneys and pancreas, leading to her having to have her gall bladder removed. 

On top of this she had an allergy to the lipid component which led to her developing an essential fatty acid deficiency and over the years lost most of her central venous access ( where central lines are inserted to infuse the TPN). For these reasons in 2010, she was assessed for transplant at Addenbrookes hospital.  Due to Rachael's size she needed a child's organs and so had to wait 3 years for her transplant.  During this time she had to ensure she stayed as well as possible in case the call came.  This meant no contact with friends/ family if they were at all ill.

On 19th March 2013 the call came in the early hours of the morning and Rachael received her new stomach, small bowel, large bowel and pancreas.

The first week consisted of lots of surgery and being completed sedated in the intensive care unit. The first transplant operation took 14 1/2 hours.  Two days later the second part was 8 1/2 hours and then a day later a further 5 hours due to complications. The first 3 months were very tough and a rollercoaster of ups and downs for Rach, her family and friends.  She spent them between ICU and the High dependency transplant ward.

Addenbrookes in Cambridge, is the only hospital in the country to carry out intestinal and multi organ transplants, Rach's family are from Surrey and so this involved them travelling long distances. In total Rach was in hospital for 5 months, this had a huge impact on her family.  Transplant patients are very ill and have a long road to recovery so having family around is vital.  However there is currently no accomodation available for families to use so they must shoulder the financial burden of finding somewhere to live near the hospital whilst dealing with the emotional rollercoaster of a multi organ transplant patients road to recovery.

Having seen everything Rach has gone through over the last 12 years but inparticular over the last 12 months,  I wanted to do something for her and her family,  but at the same time make a difference to a charity that will ensure the road is smoother for other patients who go through the same life changing operation Rach has had.  Multiple Organ transplant is a relatively new area of medicine and as such there is currently little support available.

MOTS -Multi Organ Transplant Support  charity evolved out of a friendship struck up between two multi organ recipients, who both received transplants at.Addenbrookes, and both finding themselves in daunting new territory without any support.

Dawn Carter & Emma Abdullah began to set up M.O.T.S. in 2012. Tragically, Dawn lost her battle for life a short while after in 2013, leaving Emma even more determined to make M.O.T.S. become a reality in memory of her friend Dawn.

They are a small charity providing pre and post support to adults and their families who are affected by small bowel and multi visceral transplants throughout the U.K.

They provide support in many ways, such as newsletters, telephone support, information leaflets, support groups, chat forums, family days for pre and post transplant patients, as well as offering a variety of support to patients and their families whilst in hospital, including in hospital packs for patients and eventually accomodation.

On Saturday 1st March 2014 I will be running the Nuts Challenge,  a Military Assualt course across 7km and over 60 obstacles for Rachael and MOTS. Having run it in the winter before and sworn never again in those temperatures  (you spend most of your time in rivers and covered in wet liquid mud!) I thought what better way to raise money than do it again!!!!

Thank you in advance for your generosity it will make a huge difference not only to this relatively new charity but also to the patients lives it will change


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