Monday: I visited a mum whose seven-month-old baby had died. She is struggling most days as her husband works; she’s alone at home and cries because she misses her baby so much. We talked about the day Mia died and her funeral.
Mum asked me to call the Department of Work and Pensions about a payment she’s received. They confirmed that the carers allowance continues for eight weeks after a child has died. Mum was so grateful as they’ve been struggling financially after her self-employed husband wasn’t paid for the days he took off following their baby’s death.
Tuesday: I took David, 12, and his mum to a hospital appointment. David has a brain tumour. He has suffered brain damage due to radiotherapy he’s had over the last six years and Mum finds it too difficult to take him alone on the train. David had an MRI scan which showed that his tumour is currently stable. It was a long day and both Mum and David slept while I drove them home.
Wednesday: In the morning I had counselling. All Family Support Workers have monthly sessions to ensure our wellbeing in such a stressful job. We talked about baby Mia’s funeral.
Afterwards I visited one-year-old Ash and his mum. Ash suffered severe complications at birth and his respiratory system is irreversibly damaged - he’s being supported by the palliative care team. His life expectancy is thought to be about 18 months old. As this gets closer, Mum is getting very anxious and I am supporting her by listening and helping her to think about what she’d like to happen when she has to say goodbye to Ash.
Thursday: This morning I took Amelia and Anthony, Emily’s siblings, to school. Emily is two and has a heart condition. She is often in hospital and Mum spends most of her time caring for Emily and worries that her other children feel left out. Sometimes I look after Emily so that Mum can spend time with them.
After I dropped them at school, I drove to Dami’s home. Dami is four and has Stage 4 Neuroblastoma. Dami has four brothers and sisters including a new baby. Dad is working whilst Mum is at home caring for Dami, her youngest daughter and the new baby – she’s very tired. When I arrived, I washed up, did some dusting and prepared some vegetables for dinner. I made Mum some tea and looked after the children so she could have a shower.
In the afternoon I picked Amelia and Anthony up from school and we went to the park for an hour so they do things that children do, away from the worry of their sister being very ill.
Friday: Our whole team meets to discuss our week including our successes and also things we’ve found difficult.
After the meeting, I put my week’s notes onto our database, texted all my families to see how they were and to arrange my appointments for next week.
“Being a Family Support Worker is an amazing job. It’s a highly skilled role and experience with children and families, dealing with illness and uncertainty are the most important qualifications. The hardest part is when we are unable to help a family because we are already at full capacity. We need so many more Family Support Workers to fulfil the needs of all the families out there who are having the life changing experience of having a seriously or critically ill child.”
You can help to make every precious moment count for families with a seriously or terminally ill child by sponsoring a Family Support Worker like me today.
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Thank you so much for supporting children with serious illnesses by funding our projects to give quality time to children and their families at a difficult time in their lives.
You may remember reading about Dawn. She is one of our Family Support Workers supporting Clare and Steve, whose son Jenson has Down’s syndrome, heart and lung problems and needs oxygen 24/7. He also has feeding difficulties so needs a specialist feeding tube and in the run up to Christmas was diagnosed with pneumonia and admitted to hospital.
Dawn helps Clare and Steve’s beautiful family in different ways.
She will get to their home at 7am to help the children get ready and take them to school while Clare and Jenson are in hospital.
Or she may drive Clare and Jenson to hospital so Clare can look after him during the journey.
Dawn will support Jenson’s brother and four sisters emotionally through play, crafts and even making biscuits. This encourages the children to open up, talk about their concerns and share their worries, giving them tools to better cope with the difficult situation their family is going through.
She listens to Clare and her husband, Steve, and supports them emotionally, giving them time to deal with their situation.
She may help them fill in forms and point them in the right direction of help the family may be entitled to.
She often helps with one-to-one sessions with one of Jenson’s sister, who is on the autistic spectrum. Or she may look after some of the other siblings, making them feel valued and helping with their self-esteem.
When the family needs her, Rainbow Trust Family Support Worker Dawn is there for them.
This is only possible thanks to the donations of friends and supporters like you. We are very grateful for your generosity and support to help life-threatened or seriously ill children and their families.
Please spread some Christmas joy this festive season and donate to Rainbow Trust’s project to help raise funds to reach the 23 families on our waiting lists who are caring for a life-threatened or seriously ill child.
Wishing you a wonderful and peaceful Christmas.
Thank you.
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When doctors found a tumour in her son’s liver, Marte found it difficult to cope. This is her story.
"When Fabian, my son, was two and a half, he was seriously unwell but specialists and doctors told me he was completely fine. I knew he wasn’t.
When he stopped eating and was in serious pain I took him to our local hospital, where they couldn’t identify what was wrong with him and we were referred to Brighton Hospital. Within half an hour being there we were told he had a big tumour on his liver. I didn’t know what to do or how I would cope.
He started his chemotherapy at The Royal Marsden Hospital soon after. As the tumour was very big, doctors wanted to shrink it as much as they could before operating. When they did operate they had to remove part of his liver as well and chemotherapy continued for two months to try and ensure all of the tumour had gone. Unfortunately, Fabian’s hearing was damaged by the treatment and he now has hearing aids in both ears as a result.
My husband had to take days off work to come to hospital but he couldn’t do this every time so a friend referred me to Rainbow Trust and our Family Support Worker, Jayne, started working with us very soon after that.
Jayne helps and supports us in many different ways. We couldn’t travel by train due to the high risk of infection for Fabian so she helps by driving us to and from hospital. This is of huge help not only to avoid infection but because it means one less thing to worry and stress about: there are always problems parking at the hospital so having Jayne there means I am not late or stressed when we arrive for treatment or to see consultants.
The time in the car is good for me too: while Jayne drives we talk about my worries and concerns, about how this is affecting me - she gives me emotional support, which I really need.
By the time Fabian had finished his chemotherapy, I had given birth to my daughter, Hania, so going to hospital with Fabian became even more stressful. Jayne would help by looking after Hania while Fabian had scans and x-rays. Doctors tell me there and then what is going on so I have to concentrate and listen carefully. Knowing that Hania is safe with Jayne means I don’t have to worry about her and I can have all my attention and focus on what the doctors are saying.
All of our extended family is in Poland, so we don’t have much support around us. Jayne has been amazing, a constant presence with practical solutions and really helpful. She would always think about how she could help us and would offer advice if we need it. I was really lucky to find Rainbow Trust as I didn’t think there would be anyone to help families such as mine. We were on the edge. Everything was too much to cope with.
It’s always so good to open the door to Jayne and her smiley face. She is literally the right person, in the right place ,at the right time – she has helped us so much.
Jayne is doing a very difficult job, helping parents and seriously ill children; she is amazing and I am really grateful for all the incredible support she has given me over the past three years."
Your donations and support enable families who have a child with a life-threatening illness to make the most of time together, helping us provide expert, practical and emotional support, where they need it, for as long as it is needed.
Thank you.
In March 2018, Phoebe was diagnosed with Fanconi Anaemia (a rare disease that affects the bone marrow which results in decreased production of all types of blood cells). She’d had severe pneumonia over Christmas, and had blood tests done.
The tests revealed that Phoebe’s bone marrow was failing so she had a bone marrow transplant (BMT) in July 2018. Tom, her dad, was a donor, which is very rare. If Phoebe hadn’t had the BMT when she did, she would have been more susceptible to leukaemia later on.
Phoebe had to spend 37 days in complete isolation after the transplant, where she could not have any visitors aside from mum and dad. They had to scrub in every time they went in and out of the room and all they could do in there was keep her company, watch some TV and play games, day in and day out.
Then, Phoebe was in semi isolation from August 2018 where she couldn’t mix with people outside of the family as her immune system was still compromised. It’s only now that Phoebe is able to start seeing friends and going to parties.
Whilst in hospital, a friend recommended Rainbow Trust to help the family better cope so they met Monica, a specialist dedicated Rainbow Trust Family Support Worker.
Both mum and dad work so they didn’t know anything about the medical world or the benefits out there for families like theirs. Monica from Rainbow Trust was a huge help.
Monica would also spend two hours with Phoebe so mum could get out for a break. Those days in hospital were so long - so the break made such a difference to mum and dad. Phoebe absolutely loved spending time with Monica and mum could spend some time supporting her other daughter, Harriet.
Phoebe’s mum said: “Having our Rainbow Trust Family Support Worker, Monica, has been a huge support to me and my family. Having Monica come in to give us a break made such a difference for all of us. She has supported and guided us through a very difficult year.”
When serious illness affects a child like Phoebe family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with a dedicated expert Family Support Worker to help them face and make the most of each new day.
Clare and Ben have three children: Connor, Esther, and Zachary, who was a surprise baby for them. Ben works full time and the family have no relatives nearby. When Esther was six weeks old family picture suddenly became very far from normal. After being called for a routine blood test Esther was diagnosed with Diamond Blackfan Anaemia (DBA), a disease so rare that only 125 people in the country had it, each of them with their own unique set of symptoms. Progression of the disease is different for each sufferer so it’s virtually impossible to predict the future treatment path for them.
For Esther, her steroid medication has been working well, stimulating the bone marrow to produce more red blood cells, but how long this can be continued is unknown. For Esther, the DBA syndrome also resulted in profound deafness in one ear, which has affected her education and her daily life. As DBA is so rare, even medical specialists are not wholly informed about the disease, so Clare’s contact with other parents of DBA children and social media groups has been important for her. She needs to be on the alert for any changes in Esther’s condition which might reveal that the treatment is no longer as effective as before.
A further blow for the family came when Zachary was three months old and was also diagnosed with DBA. Both Ben and Clare were tested but were not found to be carriers. This was a shock for them, and Clare said that it really knocked the family off course. Unlike his sister, Zachary didn’t respond to the steroids, didn’t sleep, and didn’t gain weight either. Admitted to hospital again at five months old, his future was somewhat unknown.
It was at this point that Clare contacted Rainbow Trust Children’s Charity to ask for some help. She wasn’t sleeping properly, and her mental health was reaching her limits. They met Christina and Nicki, Family Support Workers, who provided practical help by coming to hospital appointments with them - with three children this was invaluable – but, equally important, they were able to give Clare the vital emotional support she really needed. Looking after two children with complex needs along with an 11 year old had left her feeling isolated. In her words “with Nicki’s help, we feel human again, having someone there just for us, somebody who is independent and professional who understands our situation. It really does fill that gap when you have a family in crisis.”
Rainbow Trust’s Family Support Workers can give more than just logistical help, they can also provide that emotional support that is so crucial for families struggling to stay afloat.
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