We were approached by Sarah Dudley one of our stall holders on the New Forest Craft Market, she told us how she wanted to help a student and friend of hers called Lucy and was setting up a just giving page for her and her family to raise money for a specialised wheelchair.
Please visit Lucy's Just giving page
We decided that we had to get behind this and help Sarah. We joined forces with our partner site New Forest Collective
Between the three of us we started to contact local businesses and our own creatives to see if they would be able to donate items to the raffle.
We have a growing list of donations and these can be viewed on the raffle page, here is a snippet of what we have.
You can purchase your raffle tickets via The New Forest Collective
Please read some of Lucy's story below.
Lucy's Story
Lucy was born in December 1999 and was diagnosed with very complex health issues including many heart conditions. She underwent a big open heart surgery when she was 2 days old. She then underwent another heart surgery at 5 months old and as a result of complications needed a pacemaker; this had to be changed when she was 4 years old.
Lucy was always supposed to have a third heart surgery but unfortunately she was no longer a candidate so, after some fighting, her Mum got her to Great Ormond Street Hospital for transplant assessment. She was found suitable and Lucy was placed on the transplant list.
In August 2006 she received the heart transplant she so desperately needed. She was given a second chance at life and she took the ‘bull by the horns’ so to speak and made the most of every day. Life was good, yes she did have the occasional blip, but nothing serious.
The family started to shield at the beginning of March 2020 due to Covid; they had a great spring and summer, just being together at home. Lucy’s family is Mum, Bev, and her two siblings, Alice (19) and Ben (17). Lucy does also have 2 half siblings, Robert (30) and Emily (27), but they only saw them both socially distanced because they know how much of a threat Covid posed to Lucy. Alice was able to take up her place at Falmouth University in September, but Lucy and Ben had to continue their studies remotely, joining in classes online from the safety of their home.
In December 2020 Lucy had a bit of shoulder pain, but nothing which concerned anyone.
On 23 December, Lucy was sat at the dinner table when the pain in her shoulder became unbearable and she went as white as a sheet. Mum thought that she was having a heart attack so an ambulance was called.
Lucy was taken to Southampton General Hospital where she was diagnosed with pneumonia and was admitted for treatment. Behind the scenes, Haematology became involved because her bloods didn’t look right. They had found some enlarged lymph nodes in her chest at the top of her left lung, so a biopsy was performed. Whilst the results were awaited Lucy completely lost the use of her legs; she had no feeling from her rib cage down and it was decided she needed an urgent MRI scan.
Just before 7pm on New Year’s Eve, Mum received a devastating phone call. Lucy had a very aggressive cancer which had grown in her chest cavity in the space of a week; she had a lesion in her spine which had compromised her spinal cord. She needed to start treatment at 9am on New Year’s Day.
Thankfully the wonderful staff in the Radiology Department were prepared to come in on their day off to try to zap these new tumours; she was given chemotherapy and another treatment which is used in transplant patients.
Mum eventually got the full diagnosis of Plasmablastic Lymphoma which is a more severe sub-type of Diffuse Large B-Cell Lymphoma, a type of Non-Hodgkin’s Lymphoma; it is caused by the immuno-suppressive medication Lucy takes to ensure her body doesn’t reject her new heart.
Lucy had a first round of chemotherapy which seemed to be working. Unfortunately, during the second cycle of chemo, on 29 January, the medics found that the treatment was not working and the cancer was taking over again.
Lucy’s only option was/is a Monoclonal Antibody treatment which has never been used for this type of cancer. At the moment things are going well and there has been a significant reduction in the size of the tumours, so she will be going ahead with a second round of the treatment, and everyone who knows Lucy is keeping everything they have crossed and praying all day long.
However, it looks highly unlikely that Lucy will ever walk again; this will mean many changes for Lucy and her family at home.
The Occupational Therapists at Southampton General Hospital have been working with Lucy to plan the way forward for her. Lucy already uses an electric wheelchair when she is very tired or not feeling so well, but the chair she has is no longer appropriate for her and therefore the OT have contacted the NHS Wheelchair Service. Bev has been told there is a year long waiting list to get Lucy the wheelchair she needs. Lucy’s life has changed dramatically, very suddenly, and now it seems that she will be bedbound until a solution can be found. This will have an impact on her physical health; she has to be turned in bed every 2 hours and Mum is having to do all her personal care. Lucy’s mental health will also suffer – Bev and the staff around Lucy can see the difference in her mood when she is able to borrow a hospital chair and get out of bed during the day.
Lucy’s medical team have also said that if she can get out of bed she will be able to go home inbetween treatments; having Lucy home for a few days at a time will have a beneficial impact on the whole family.
OT assessments have reported that major works are going to be needed at home. Home is a Council property where the family have lived for 17 years. One option the council have currently suggested is Lucy being housed separately from her family. This is not an option because Lucy is also epileptic, her mum is her full-time carer. Lucy cannot, and will not, cope on her own with her new disability which has been caused by the cancer, on top of all her other medical conditions. It has also been suggested by OT that the family dining room has to be given up to make a bedroom for Lucy. This cannot be a permanent answer as it will not be liveable. Lucy and her family always sit at the table to eat together, the table is also very important during Covid times as Alice and Ben sit at it to do their Teams calls with college and Uni. Walls will need to be knocked down to enable Lucy access to the ground floor rooms, the existing wet room design isn’t going to work because it is so small, the kitchen needs major remodelling. Lucy loved to bake cakes with her mum, the kitchen is tiny and unworkable now.
Throughout all this, Bev has been with Lucy in hospital whilst Ben and Alice have been staying at home and with their siblings; it has physically torn the family apart. Lucy has some additional learning needs and was unable to fully understand what was happening when she was admitted; it soon became obvious she needed full-time support in hospital. Family and friends are rallying round to do everything possible to support the whole family, but priority now is to get Lucy a suitable wheelchair. Various charities and organisations have been approached, but Lucy is either too old and for an NHS chair there is a year’s waiting list; Lucy needs to be as independent as possible at 21 years old. So we are looking into buying one privately, but specially adapted wheelchairs are very expensive,
There is now some urgency to get her out of hospital – she has been there for 9 weeks and it’s just not Covid-safe for her. On top of all her current medical conditions Covid would be fatal for Lucy.
Whilst researching all the options, a crowdfunding page has been set up for Lucy – friends and family have been so generous, but we know that Lucy needs more to move forward with her life. If you felt there was any way to publicise Lucy’s plight and gain support for her we would all be so grateful. We understand that there are so many people in need at the moment, but Lucy is so special to us all; I have attached some photos to show you just how special. Despite everything the last 9 weeks have thrown at her, Lucy is still smiling.
https://www.justgiving.com/
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