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01-Jake
Jake Cathcart BCyA
9th February 2019
Theo Fry
22nd February 2019
Published by HLH18 at 21st February 2019
Categories
  • Stories from the camp
Tags

Fatima Al-zahra Farooq
#Fearlessbutterfly

2nd August 2015 - 23rd March 2018

Fatima was born with a heart condition called Tetralogy of Fallots (ToF). The name Fallot originated from the doctor who diagnosed this condition. Tetralogy means fourfold – there are four defects found together. These are; Pulmonary stenosis, Ventricular septal defect (VSD), Over-riding aorta and Right ventricular hypertrophy.

Fatima also had numerous complex medical conditions including bowel blockage, cleft palate, imperforate anus, left pelvic kidney and all these were caused by Fanconi Anaemia – is a rare, inherited blood disorder that leads to bone marrow failure. Although FA is a blood disorder, it also can affect many of your body’s organs, tissues, and systems. Children who inherit FA are at higher risk of being born with birth defects hence Fatima had so many.

But this didn’t stop Fatima from living her life to the max, she enjoyed every bit of it! She made sure she amazed all the medical professionals with her fight and determination, sometimes even I wondered if she actually had all these complexities , she was really the Fearless princess who taught me how you fight for life. She always smiled even when she had To go through multiple surgeries and hospital admissions.

Fatima had a bumpy welcome to the world, requiring resuscitation and rescue breaths few minutes after she was born but then she managed her own oxygen levels, went through a bowel surgery the next day and then up and down until the reality hit that she did have ToF and required cardiac intervention.

We were transfers to Alderhey on 19th of October 15, and then she went for a stent the next morning on 20th of October and deteriorated which led to Fatima needing an emergency open heart surgery for a bt shunt and that’s when I realised she was a real fighter! The brilliant Alderhey team brought her back to me after a gruelling fight they all had to put up including Fatima to make sure she was given a chance at life.

Fatima grabbed This chance with both of her hands lived life and never looked back until she started to deteriorate again and it was decided she needed her full repair of ToF. She was admitted to Alderhey once again on 15th of January again for another chance at life but unfortunately after fighting ecmo and hlh, the pain got too much for her and she won the war to be peaceful again on 25th of March She gained her angel wings and I had never seen her so peaceful in her little life ever before and I knew it’s was the right thing we all did for her at Alderhey.

fatima4-min

I am eternally grateful for the NHS and the people who work for it, especially all those on ICU at Alder Hey including the best cardiac team that we have, without them Fatima would never have had the chance at life in first place. The first Stars and Stripes ball was held just a night after Fatima had the lifesaving surgery on 1st of March. Each time she deteriorated she made sure Ram was there with her, be it the first time she went to theatre at 10 weeks old, or now being a 2.5 years old girl. He was her life saviour and she didn’t let him down until the very last second so he fixed her heart in the end just a night before the amazing ball was held.

The day Fatima passed away, the only hope was that the camp was going to be in Fatima’s honour, I cried with joy. To know heart operations will take place that will save Children’s lives – that families will be able to enjoy a future together, Those families would never need to know the pain I or some Other parents have endured! Nothing in this world could take this hope away from me that night, when I needed it the most thanks to Team 1c and Healing Hearts.

#fearlessbutterfly

Written by
Shazeena Ahmed
Fatima’s Mum
Team 1c

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Healing Little Hearts is a UK based registered charity, funded entirely by our supporters. We receive no financial assistance from governments.

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© 2019 Healing Little Hearts. All Rights Reserved.