Behind every charity is a story about why and how the charity came about and the story is usually about the person who inspired the charity to begin.
My name is Jane Bell and I was inspired by my three little bells, Albert, Heidi and Lilly, I wanted to be able to help other families and children living with life-long, life-threatening and life-limiting conditions of the bowel.
Gutsy Gastros was born from that idea and informed by my own personal experiences. We set out to support, raise awareness, raise funds for institutions providing support, care and direct service delivery to children with life-limiting and life-threatening gastric issues and their families
Here is Albert’s story.
Albert’s has a condition called pseudo obstruction myopathy and neuropathy. His swallow, stomach, bowel and bladder do not function. His eyes and large muscles are affected too. He has ASDs – holes in heart and fluid in some parts of his brain. He has other conditions too but they are secondary to the above.
It means he cannot swallow, eat or drink, go to the toilet, see properly – enforced blindness – speak clearly, move without an extraordinary amount of effort causing extreme fatigue throughout his body and significant and constant pain. He is regularly on morphine so he doesn’t suffer.
He is fed through a large cannular inserted into his chest wall into a major vein near his heart – hickman line. This line is extremely dangerous and if pulled out could result in him bleeding uncontrollably. Also each time we loose a Hickman line due to line infection or removal we have limited access (about three left) to sustain life. He has three other tubes draining his bowel, stomach and bladder otherwise he would stop breathing as his fluid would flow back up into his lungs. His severe reflux comprises his oxygen levels and breathing.
He has blood taken each week from which they make this artificial feed. He receives it via a machine over a constant eighteen hours through the Hickman line in his chest. He has six hours off his machine during a twenty four period where he needs constant monitoring incase of dehydration and or blood sugars. It is called TPN and causes liver failure, fluid shifting, line infections and limited life access, all of which are fatal. Albert has not qualified for a liver or small bowel transplant due to his severe allergies and the fact he wouldn’t survive the surgery.
He is extremely vulnerable to infections due to the plastic in his body together with infections and viruses in general all of which could be fatal.
We go to panel every six months to qualify to keep him alive on TPN which entails proving quality of life, brain function, pain management and function out of hospital and obviously our care practice at home too.
Albert is the first child home on TPN as children do not usually survive past two years or come home without some form of enteral feed. We fought for mainstream school as Albert has normal brain function and our other children Lilly and Heidi thrived in Christ Church school, Chelsea. Avis and her team’s kindness and dedication have allowed this to happen. Amanda, his palliative care nurse (from our home care package) supports at Albert at mainstream school another first and finally after three years off ‘fighting’ and proving that Albert is worth educating, we now have a Special Educational Statement for 20 hours educational support a week. He manages 3.5 days a week.
Albert has recently come home from Kings ITU after suffering Septic Shock caused by a Hickman Line infection as a result of E Coli that over run in his bowel and as he has zero immune system, he was unable to stop the E Coli spreading to the blood. His heart failed six times along with fluid shifting a side effect of TPN that is usually fatal. This recent admission is one of many and is what happens with this condition. Each time we just hope and pray his spirit overrides his body. He will regularly go into hospital for different reasons all of which may cause him not come home again or survive.
Albert loves his time at school and socialising with his friends. He is an active and sporty little boy who is determined to reach the same milestones as his friends and be a Fireman!
Our incredible children and many others like them are surviving longer and deserve to live not just exist. These life-limiting and life-threatening conditions of the bowel are secondary to their will and determination to survive and be part of their families and communities in as normal way as possible.
Together by raising awareness, helping towards valuable research as these conditions are currently incurable, helping the children and their families, I believe we can make a difference.