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I have always been aware of EACH for as long as I can remember, however, until August of 2018, I didn’t realise just how much of a vital link they would be for my friend. 

Here is the story of Wilber, told by his Mummy, Tammy. 

Wilber was born at 32 weeks weighing 3lb 9oz. He was given a diagnosis of arthrogryposis while still in the womb due to contracture of his joints first noticing his fists were clenched constantly. Further appointments noticed less movement in scans & his mum not feeling him move. Arthrogryposis falls under 300 conditions. Wilber wouldn’t get a formal diagnosis till birth. When his mum was 26 weeks pregnant she was diagnosed with severe polyhydramnosis, carrying extra fluid than she should. This indicated that Wilber had problems with his breathing but to what extent they wouldn’t know till his birth but he would need intubation at birth and be on a ventilator. Wilbers mum had 3 fluid drainages while she was pregnant. 2 successful and almost 2 litres drained each time and 1 failed attempt. Wilber was delivered by emergency C-Section at 32 weeks due to his mum having the severe polyhydramnosis that was making her heart skip beats then developing severe preeclampsia. Wilbers first night on nicu was touch and go he presented very complex and needed a lot of medical intervention. Wilber stabilised and at 7 days old went to the EACH panel & was excepted. A few days later EACH made contact with Wilbers mum & well being worker visited her on the unit. This visit was to give her information on what services were available to her through the charity. The charity then worked with family the whole way through Wilbers journey. Providing counselling, doing memory work and being a vital part of the journey. Wilber got a diagnosis after a muscle biopsy at 6 weeks old that he had “central core disease” they were also told that there was no other cases in the population reported like Wilbers. Wilber had a lot of ups & downs in his time on nicu and had a big appointment on 14th August with a paediatric ventilator specialist from Cambridge. The news given was the family’s worst nightmare that Wilber was never going to get better due to the central core disease & having chronic lung disease so the family had to make the heart breaking decision to let Wilber go. EACH were with the family every step of the way and Wilbers mum got to spend 9 beautiful days at the hospice with Wilber after he passed away on 16.08.18. 

On the 18th August, Tammy asked me if I could come to the hospice and take Wilbers last photos. Being a photographer, I have taken thousands of photograph and hundreds of them being of babies. This was different, I didn’t know how I would feel but being greeted by Mr. Gerrarty at the Hospice, made me feel so comfortable. He was kind and caring. He showed to Tammy and Wilbers room and I was able to take my time in getting photographs that Tammy wanted. 

Whilst there, I also met and spoke with Michelle. A person that has become a huge part of Tammys life. She has spent the morning with Tammy making hand and feet casts of Wilber as well as a hand cast of Tammy holding Wilbers hand. She had left paints and canvases for Tammy to use if she wished. 

I knew there and then that should any parent be in this situation, they should be given this opportunity should they want it. 

The care that Tammy received during her stay at the Hospice and that she is still receiving from them now has been paramount in her grieving process. 

I decided that I wanted to fundraise for EACH and with my 40th coming up next year, I wanted to do something totally out of my comfort zone......so the Three Peak challenge it is!! 

Any amount of money I raise will make a huge difference to the charity. 

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