Carter's Story

Posted by
Vicky Hewlett
Posted on
5:20pm, 23rd July
Categories
Charity
photo of Laura (Carter's mum) and Carter

Imagine having to be careful when holding your child’s hand because his joints dislocate on a daily basis or having to take care when you cuddle him because he bruises so easily. Imagine having to co-ordinate appointments for the ten consultant teams he is under. This is life for 10-year-old Carter and his mum, Laura. Thankfully, they have the support of Roald Dahl Specialist Nurse, Tina who provides both practical and emotional care and helps Laura feel less isolated and alone.

Tell us about Carter’s condition and the circumstances of his diagnosis: “Carter (10) has Elhers-Danlos Syndrome Type 2 (EDS) which means that he dislocates his joints on a daily basis. He’s in pain constantly and bruises like a peach at the lightest of contact. He has stretchy skin so doesn’t heal very well. The condition also affects his gastric system and we have just been told that his left side has stopped growing, which could be down to EDS or something completely different. He also has Asperger’s which is quite a recent diagnosis and something I’m still learning about, but it makes sense with Carter’s traits and behaviours. He is cared for by ten different consultant teams including: Rare Diseases, Genetic, Mental Health, Orthotics, Physio, Occupational Therapy, Orthopaedic and Gastroenterology.”

photo of Carter

“Carter has had problems since birth and didn’t meet his milestones as he should. He was a super floppy baby, didn’t sit up until he was one, never crawled and didn’t walk until he was two. He was then referred to the Genetics Team and got a diagnosis of EDS. EDS is a connective tissue disorder and it affects every part of the body including the gastric system. He was initially fed through a tube as he would be violently sick otherwise. While he doesn’t need to be fed through a tube now, he is seen by a Gastroenterologist as he has problems with swallowing and has been diagnosed with really slow motility. He gets horrific stomach pain and struggles with needing to constantly go to toilet.”

“Carter was diagnosed with EDS around five years ago and we are looked after by Rare Disease Team at Birmingham Children’s Hospital. That’s when we met the Roald Dahl Specialist Nursing team including Tina, Carter’s Roald Dahl Nurse. Tina is amazing. She really looks after all of us. Carter forms very strong relationships and it was really hard for him when his main consultant retired. He has become very attached to Tina and having her at his appointments – a face he recognises and feels comfy with – is a massive support for us all. I can text Tina and say, “I’m having a rough day” or “I’ve had a report from a doctor, and I don’t understand it” and she will go out of her way to explain to us in a way we understand.”

photo of Carter

How does Carter manage his condition? “Carter doesn’t know any different; this is normal life for him. He amazes me and his dad every day. He’s such a happy soul, he just gets on with it.  There are times when he has curled up and sobbed and said, “mummy I wish someone would take my pain away and I could be a normal boy and play with my friends” but he tires so easily. It’s heart-breaking as a mum. When I hold Carter’s hand, his wrists pop out constantly and cuddles bruise him so easily. A lot of things affect him because of his Asperger’s too. He suffers with anxiety and the fear of someone hurting him, especially other children as he knows the implications for him are massive if he does get hurt.”

Tell us about Carter's hobbies and passions: “Carter’s main passions are LEGO and transport. He is obsessed with LEGO and his dream is to have a LEGO bedroom. His daddy has even covered himself in LEGO themed tattoos (despite being originally anti-tattoos), to help make Carter feel special. He has had us all tattooed onto his arm as a LEGO family and Carter’s friends call him the LEGO man! Both Chris and I work on the railway and Carter loves every form of transport including trains, aircraft, cars and trucks. He memorises aircraft registration numbers and he can tell you the seat configuration and the operator they belong to.”

photo of Carter

What impact has having a child with a long-term health condition had on you and your family? “It’s had a big impact. I’m not ashamed to say that I suffer from anxiety and I’ve had to go to counselling sessions to try and deal with it. Rationally I understand as a mum that there’s no way I could have known about Carter’s condition during my pregnancy but because I was poorly during my pregnancy, I blamed myself and thought I’d done something wrong. I constantly asked myself if had exercised enough or eaten the right things. It’s had a huge impact on us as a family too. We run our lives like a military operation. I have a colour coded diary to help me keep track of appointments and after school activities for the kids. When Carter’s in hospital for periods of time, I stay with him which means his siblings don’t get attention from me, so Chris has to carry out the role of mum and dad and do his daughter’s hair for school etc. The other children get frustrated as they want time with mummy today, but mummy has to go to hospital with Carter. There have been times when it’s had a negative impact on our marriage. We both have full time careers and I rarely see my husband and that’s purely so Carter always has a parent with him and that can affect my relationship with Chris so the time we get when we are together is precious. Everything we’ve gone through has ultimately brought me and Chris closer together. “

photo of Carter

“We always have to plan ahead for family days out. We have to check if the ground is level so that if Carter wants to get out of his wheelchair, he can. We also have to decide whether he will cope if it’s busy. We always go to the same place for our annual holiday as familiarity is very important for Carter. The locals know us and understand Carter’s condition and they are patient with him. Following Carter’s birth, we did debate whether to have another child. We decided to but sadly I miscarried. We did then go on to have another little boy and I worried initially that Cameron might have the same condition as Carter. Luckily, he didn’t but he has medical issues of his own. Saying all of that, I wouldn’t change anything. Carter is my little hero. He can be cheeky and naughty like all kids, but he is such a character. He is super intelligent, and we are super proud of him.”

photo of Carter

How has the Coronavirus affected things? “It’s affecting us a lot. My husband, Chris had been due to have major back surgery as he developed a spinal prolapse through lifting Carter. The surgery has now been delayed due to the virus, so I’m having to deal with lifting Carter on my own. I’m massively worried about the fact that they’re saying there’s a difference between Carter’s left and right side and investigating that has been put on hold. I understand why they have had to postpone these things to keep everyone safe, but it is worrying. I had to go into hospital last week with my daughter as she had suspected appendicitis and it was a scary experience. The nurse’s face was covered with a mask and that’s difficult, especially for children as being able to see a reassuring smile is massive and when they can’t see that because of the mask, it’s so sad. The nursing staff looked so tired. I am keeping in touch with Tina via the phone and just texted her to check that she’s ok and keeping safe. Everything is on hold but it’s so reassuring that we can speak to her when we want to. It makes a huge difference. Tina is an angel. I was so sad last time I saw her that couldn’t hug her like we usually would. We had to elbow bump instead! To me, she’s a superstar.”

photo of Roald Dahl Nurse, Tina

How has your Roald Dahl Nurse helped you cope with these challenges? “Carter often doesn’t want to communicate with the medical professionals, but Tina will get on the floor with him, listen to him on his level and that’s invaluable.Roald Dahl Nurses like Tina don’t just treat illnesses or injuries, they look after us as a whole family unit including me, dad and Carter’s siblings.  Knowing that I can just pick up the phone to Tina when we’ve had a rotten day, or if Carter has been unwell, makes the world feel a little bit less lonely as a mum. I don’t feel as isolated and alone. I know that I am always going to be Carter’s biggest advocate but to know that Tina is in our corner fighting battles, which if we had to fight on our own would feel overwhelming, makes a huge difference.”

“Tina helps co-ordinate all Carter’s appointments, which really mount up as he is under ten different consultants. She also attends all his appointments and puts everything into plain English, as sometimes doctors speak in a way that can be difficult to understand if you’re not medically trained. If she doesn’t understand something, she goes and finds out and comes back straight away. One of Carter’s favourite things to do is swim as he is completely weightless in water, so Tina sorted out hydrotherapy sessions for him locally to where we live. Half an hour in the pool is absolutely amazing for Carter. Even though he is doing physio in the pool, it’s great fun for him. It has a huge impact that Tina does things like this. Ultimately, Tina is a familiar face for Carter who he trusts massively. She is so reassuring for him as she is so calm and lovely. She makes Carter feel like he is the best child in the world and for Carter, that’s special.”

“Tina came in to Carter’s school with us as they were being unsupportive because they didn’t grasp Carter’s condition. She created an entire pack so they could understand in layman’s terms how his condition affects us as a family and the practical things they could implement so Carter could feel more included at school. No one else would have been willing to do that. It’s the small things as well. The Roald Dahl Nursing Team arrange parties for the children and families they support. The last one we attended was at Christmas and all the nurses get dressed up. It’s nice for Carter to be around other children who have to spend a lot of time at hospital like him – it’s great for him to see he’s not alone. It’s a safe space for him, and a lovely day where he can make some memories. It’s massively important.”

photo of Carter with Roald Dahl Nurse Tina and Marvin the charity mascot

“Life has been so much easier since we met our Roald Dahl Nurse, Tina. For example, Carter outgrew his wheelchair and she immediately got him an appointment to fit for a new one. Tina arranged for an occupational therapist to review and see how they can help us a whole family.”

Tina has also helped us secure funding to help with our day to day lives. We were receiving Disability Living Allowance (DLA) but when it was up for renewal, we were then declined. Tina went through the appeals process with us and got consultants to write statements in support of Carter receiving DLA and because of that, we were successful. Receiving DLA makes a massive difference to us as a family. Carter uses special moulded, weighted cutlery for example and each set costs £18 and they don’t last long. He always needs new clothes as his balance is so poor that he falls over a lot and always has holes in his trousers. It’s also really important to enable us to afford activities where we can make happy memories for Carter. As a normal family with a mortgage, we would struggle without DLA to fund the special equipment Carter needs. Tina has also introduced us to the family fund as she was looking at charities who could enable Carter to have a better model of wheelchair. She was looking into all of that for us. One thing Carter always wanted is a bike, but he doesn’t have the power or core strength needed so before the Coronavirus situation happened, she was going to look at where he could access a special bike so he could feel like his other siblings.”

How would you feel if you didn’t have your Roald Dahl Nurse? “If we didn’t have Tina, I would feel really isolated and alone as a mum. I know what that feeling is like as we haven’t always had Tina. Prior to us having a Roald Dahl Nurse, I felt overwhelmed and completely anxious about the future. I worried constantly and struggled to manage appointments and with the effort of getting the doctors to listen to me while holding down a full-time job. It was really hard and affected us massively. I literally felt at times that I had no one to turn to and it was just myself Carter and Chris against the world.

What would you say to the people who have donated to Roald Dahl’s Marvellous Children’s Charity and helped fund your Roald Dahl Nurse? “Thank you – just thank you from the bottom of my heart. They make such a difference to families like mine. Each of their donations provide help to families like mine, which makes the world seems like a brighter place and those hills don’t seem as big to climb. I will always be grateful, I really will. Without Tina, I would struggle to cope.”

Every seriously ill child deserves a Roald Dahl Specialist Nurse, please make it happen by donating today: www.roalddahl.com/donate or you could take part in our summer fundraising activities for all the family – get started here: https://www.justgiving.com/campaign/marvellousfundraising