Severe Aplastic anemia, Nevaehs story & the heros on ward 6

We are fundraising for the patients, parents and amazing team on ward 6 at Sheffield children’s hospital (SCH) to give that extra bit of help to help get through the tough time they are going through like we have been through without the ward 6 staff, parents and patients I don’t no how we would have got through this nightmare we are living.

And many more parents are still going through now, we want to help patients and parents by providing things that are needed for the ward and parents that need help with cost of providing what is needed for the long stay ahead this is to help provide with travel costs, food, books, essentials etc.

Please can we ask for your help ,

Here is our story and why ward 6, the parents of ward 6 and the oncology team are our real heros.

Our beautiful daughter Nevaeh is 12 years old, She loves music and dancing but mostly she loves spending time with family and especially her best friends doing what 12 year olds should be doing.

But unfortunately for Nevaeh that suddenly changed in June Nevaeh suddenly became ill while on holiday where we ended up taking her to skegness emergency department were she was then sent to Boston hospital for blood tests that’s were they told us (what would be every parents worst nightmare) all her blood levels are dangerously low and that she was being transferred by emergency blue lights to Nottingham QMC with suspected leukemia (ALL) as you can imagine our world shattered. After 2 days in QMC we was transferred to Sheffield children’s hospital (which is our home town and now our second home) for further tests including a bone marrow biopsy.

Then on the 2nd of July we was told it wasn’t leukemia (ALL) she was diagnosed with severe Aplastic Anaemia which is a life threatening condition affecting her bone marrow (bone marrow failure). Which means she cannot produce the right amount of blood cells for her body. Red blood cells to carry oxygen, Platelets to control bleeding and white blood cells to fight infection. This has resulted in rashes, bruising, tiredness and she is more susceptible to catching infections which in Nevaehs case could be very severely life threatening as she has no immune system to fight it.

Nevaehs illness and the short-term treatment she is receiving means she misses out on many things a normal 12-year-old would usually do. Nevaeh tires very quickly and bruises easily she often also suffers from platelet spots (petechiae) from bleeding under the skin as her platelets get severely low which if they get to low would result in internal bleeding. Every week Nevaeh must undergo blood and platelet transfusions, which leave her with scars from the needles and canula which is required for each transfusion. The transfusions can only be short-term treatment as it is very damaging for anyone to receive so many transfusions.

The best and only cure of treating the illness is for Nevaeh to receive a bone marrow transplant from someone who is a suitable match. A sibling match is the first option but unfortunately for Nevaeh that wasn’t possible as both her brothers was tested but was only a half match so a unrelated match was our only hope thankfully the amazing transplant team at SCH found her a matched donor.

Nevaeh now has a long painful road ahead she has had to undergo surgery for a central line to be fitted for treatment, She has had to have multiple invasive tests and then she will receive chemotherapy just like a cancer patient in order to wipe out all remaining bone marrow. This will mean months in isolation in hospital on a children’s oncology ward, were she wont be able to have any visitors as she will have no immune system and be more susceptible to infection whilst receiving treatment Nevaeh will also lose all of her hair due to the chemotherapy she will receive.

With Nevaeh having to spend months in hospital, her mum will have to take a considerable amount of time away from home and her brothers in order to be there for her whilst she is in hospital.

We are greatly appreciative of anyone who is willing to be tested and register to help others like Nevaeh with this devastating condition.