Zacharys End Of Life Fund

This story comes with a trigger warning.

 

Hi everyone, I’m Zacharys Mum, Natasha, Zachary is our 19 month old son who has spent the majority of his life fighting in hospital.
He has several medical conditions which are currently undiagnosed but are as follows:

• Heart Conditions (Pulmonary Stenosis, Aortic Stenosis, Heart Murmur & abnormal  and narrowing veins)

• Liver Problems (NRH)

• Spleen Problems where is doubled in size

• His Gut doesn’t work so he doesn’t absorb fats

• Pancreatic Deficiency
• Calcification on the brain & Kidneys

 

I never thought I’d be setting up this fund but we need the help, this is a fund for Zacharys end of life activities and to help towards his funeral when that time comes.

 

 

 

This little face here doesn’t portray a child who is critically Ill? I know

He doesn’t look poorly or like anything is wrong with him? I know.

He looks like a normal child? I know.

 

That is what makes this 100x worse.

 

A little back story, Zachary was originally a triplet but unfortunately we lost his two siblings while carrying, the first at only 9 weeks (7/11/19) and his identical twin at 16 weeks via miscarriage on (7/1/20), that was hard enough but then to give birth to Zachary at 5/6 weeks early via emergency Caesarean, to then having to spend time in NeoNatal due to him being unwell and him fighting ever since, that seems like a breeze.

Zachary was first hospitalised at 6M old with Covid-19, he was taken in to Exeters Bramble Ward as his temp was high and his breathing was erratic, on this visit they started finding other issues within Zachary, from holes in his heart, to pulmonary stenosis and he was put straight under the paediatric care team, he recovered from this quite well and didn’t spend a massively long stint in hospital THIS TIME, when Zachary approached 9M of age, he became severely poorly and had two massive gastrointestinal bleeds to where we nearly lost him.. he went for emergency surgery at Bristol Childrens Hospital and the teams basically saved our little boys life and gave us another chance with him.

 

 

 

This was Zacharys first stint in Bristol Hospital which only lasted 16 days but felt like a lifetime… watching our son fight for his life on the HDU was the hardest thing ever, or so we thought, Zachary has had several stints in many hospitals since this admission due to having respiratory issues, to trouble breathing, anaphylactic shock, to his organs failing.. Zachary has been through several endoscopies, colonoscopies, lumber punctures, he’s had bone marrow taken, a laparotomy, several femoral lines, picc lines and I don’t even wanna think how many scans..

 

 

in July 2021, we got admitted to Exeter Hospital, Bramble Ward, who know Zachary exceptionally well, we were admitted this time with a high temperature, severe worker breathing and a very distended stomach, us thinking this would yet again be another short visit turned into a 7 month visit & this is where we are currently…

 Zachary travelled to Bristol Children’s hospital after 6-8 weeks in Exeter for further care where he has spent most of his stay but he also travelled up to Birmingham Children’s to see the liver specialists for 12 weeks within this stay, he’s had MRIs, a close call heart failure and organ failure, many theatre visits, scans, specialised blood testing, he’s on specialised medication called TPN and we have recently found out all that his gut doesn’t work, his liver will slowly start to fail and a transplant isn’t possible due to the severity of his heart problems which now cannot be fixed. We are still unsure on the length left to this visit before we can take our boy home to live out the remainder of his life.

 

 

Myself and David are completely heartbroken that our family is going to be broken, god knows how we will explain this to our daughter, Eleanor, 2.5YO, who is Zachary’s best mate.

 

 

 

Zachary will be coming home with a short and very restricted life due to his medication, the doctors have told us to make the best memories and treasure all the time we have left with him, which we intend to do.

 

There is probably a lot in this that I have missed but I could go on forever and you’d get bored,

in the short of it, we are going to have to say goodbye to our happy boy in the near future and would really appreciate any support/help to make his final days the best we can and give him the best send off, which he so deserves, when that time eventually comes.

 

Thank you very much for reading our story and we appreciate ANY donation. Whatever you can do to help ensure this little bundle of love, gets the best out his little life.

 

“Make your memories this Christmas”

I will personally be putting updates on my Instagram & doing a “Day in the Life” diary on TikTok of the things we get up to for you all to be kept updated. 

All our love,
the Reeves family.