A Gift for Will

I know how much this will embarrass my sister and Brook as they haven’t asked for this…. But with an overwhelming amount of people reaching out to me asking how can we help my nephew Will during this challenging time, I feel that maybe this gift would help him the most…

As many of you will be aware my dear nephew Will has been very poorly in Bristol Children’s Hospital for over 5 weeks now. During this time he was placed in an induced coma on a ventilator in intensive care, had 2 operations, countless MRI’s, CT scans, X-Rays, blood transfusions, tests and procedures. Will has had a chest drain fitted since the beginning when they discovered he only had half a lung working. So far this has drained well over 15 litres (they have now lost count). Will is being fed via TPN to let his inside heal (including his pancreas, bowel and liver). The complexity of all of this has left top doctors very puzzled and turning to specialists from all over for advise. However, following on from more tests they found out Will has a very rare and serious metabolic genetic disorder Homocystinuria.

There is no cure for this condition and sadly cannot reverse any damage already occurred up until now including his autism, dyspraxia, speech and language, eyesight etc. which they have been told is the very likely cause of these things. But now they are aware it can be managed to prevent life threatening conditions Including brain hemorrhages and strokes. Sadly the only way to prevent this is large amounts of daily medication for life (that will be hard to tolerate for Will) and Wills diet. Will will no longer be allowed natural protein, which is in almost all foods and especially everything he loves and lives for! His diet will be extremely limited and most things will need to be made from scratch from protein free prescription ingredients.

This has left them all devastated as Will adores his food (especially meat and eggs!). He lives for his next meal and it’s one of his 2 favourite things in life.

Doctors are having to take things very slowly as his nutrition to heal his gasto damage contains the harmful protein (can’t source one without it in UK) so it’s been quite challenging and they are having to take things very slowly. Which sadly means it’s unlikely he will be home before 2024. Doctors have told them to prepare to spend Christmas in hospital.

Once home they are all going to have to start navigating a new normal as a family which is going to be a very challenging and a tough journey. Things like popping out for a bite to eat at Rosies Cafe or Friday night takeaway will be a thing of the past (Will adores takeaways and eating out!) as will a usual Morrisons weekly shop and daily family meal.

During all this Chrissie and Brook have 2 amazing children back in Bude who have been passed from pillar to post. The pressure of this, 2-3 times a week round trips home and hospital life has been very difficult for them all as a family.

Will is the kindest most gentle soul you will ever meet who will always try despite his struggles. Other than food his biggest passion is football & their stadiums and loves going on trips to visit the stadiums , sometimes watching a match and buying their club scarf to add to his collection. So far Will has visited 48 UK stadiums and sadly had to cancel his last trip that was due the week he was admitted to hospital. On top of this he had to cancel his birthday present back in March a trip to watch his favourite team Tottenham as he was just too poorly. He does have another match at Tottenham booked in December to make up for that, but sadly this will also now need to be cancelled.

So this brings me back to when so many people ask what can we do or get for Will? Will has never been bothered by “things” he just loves experiences so I thought maybe would could club together to give him something to look forward to and the opportunity of a little trip or 2 to visit some more stadiums to tick off his list once this is all over.

So… any help whatsoever would be so amazing and mean the world to him.

Thank you for reading xxx

Nat