Unique Stem Cell Transplants for Grandfather and Grandson30 Jul. 2020
MDS UK Chairman, Ted Peel, and his grandson, Romain, are set to receive stem cell transplants within weeks of each other.
They want to raise awareness, encourage people to become stem cell donors and generate essential financial support for MDS UK and Teenage Cancer Trust
Ted: “It’s great to be given another chance at life”
Ex-lawyer Ted was diagnosed with MDS in 2015 following extreme fatigue, regular coughing up and passing of blood and several bone marrow biopsies.
“Following an unsuccessful period of G_CSF to remedy low a white blood cell count, I was hospitalised three times with sepsis where my temperature plummeted to 32C”, says Ted.
“Fortunately, I found considerable support and knowledge within the MDS Patient Support Group, a charity supporting patients and carers.”
MDS (Myelodysplastic Syndromes) is a group of malignant blood disorders in which the bone marrow fails to produce healthy blood cells. All types of blood cells can be affected, causing a range of symptoms, anaemia and frequent infections being amongst the most common ones. Ted was prescribed prophylaxis antibiotics to prevent further infections, but they continued including some in his mouth, triggering hospital admissions and weight loss.
“My transplant treatment scheduled for this spring was sadly postponed as it was deemed too unsafe for me to be admitted to the hospital due to Covid19”, says Ted.
Fortunately, he was told in July that he would be admitted promptly for the treatment at Kings College Hospital as cases of Covid19 in London have decreased.
“It’s great to be given another chance at life”, says Ted. “I want to say thank to MDS UK and the doctors and nurses in the Haematology Dept. of the hospital for their support."
Romain began experiencing migraine headaches and fatigue while studying for A Levels and was prescribed pain medication in the belief that exam stress was the cause.
After a prolonged period of deterioration and persistence by his Mother and Grandmother, he was finally diagnosed with Acute Lymphoblastic Leukaemia (ALL) in September 2019.
Romain: “Although my specific mutation complicates my treatment, I was really interested in the genetics behind it”
Further tests found that he also had the Philadelphia malignancy (Ph+) - an abnormality of chromosome 22, where a piece of chromosome 9 and chromosome 22 break off and attach.
“Although my specific mutation complicates my treatment, I was really interested in the genetics behind it”, says Romain. “I’ve learnt a lot going through my diagnosis and treatment.”
In paediatric patients with ALL, the Philadelphia malignancy is uncommon and very high risk, with only 20%-30% of people being cured by chemotherapy alone.
Indeed, six months of systematic chemotherapy failed to cure Romain, who was informed that he needed a stem cell transplant.
“It was a scary situation, but I was mentally prepared for it” says Romain. “I’m aware that most Ph+ cases result in a transplant to prevent relapse scenarios.”
Fortunately, Romain’s 16-year-old sister Sidonie was a 12/12 match and donated some of her stem cells to be transfused to her brother. Romain is currently starting his transplant journey at The Royal Marsden Hospital.
“There’s many possible dangers, yet again I found myself interested in the science”, says Romain. “The genetic implications of being a chimera are fascinating! I can’t wait to be allowed out with my mates again!”
How to donate bone marrow
If you’re between 16 – 30 and in good health, sign up to Anthony Nolan's register and you could be a lifesaving match for someone with blood cancer
You Can Become a Donor!
Even if you’re older than 30 you can become a blood donor if you're in good health. Check your eligibility at the dkms site
Familial blood cancers
With Ted, Romain and, previously, Ted’s Grandfather suffering from forms of blood cancer, their stories link to the wider issue of whether the diseases can be inherited.
In June 2019’s MDS UK newsletter, Professors Jude Fitzgibbon, Tom Vulliamy and Inderjeet Dokal of Queen Mary University of London considered familial MDS: https://mdspatientsupport.org.uk/wp-content/uploads/2019/08/20266-MDS-Newsletter-Jun2019-v10.pdf (page 7).
They found the phenomenon to be rare but claim that many genes have been identified that are responsible for an inherited predisposition to MDS.
Their research has highlighted the importance of making specific modifications to therapy to achieve optimal outcomes and greater awareness among haematologists, enabling more tailored management of at-risk individuals.
Appeal: MDS UK Support Group and Teenage Cancer Trust need your help today
“However, more support is necessary, and we want our combined journeys help to generate essential funds for our respective favourite charities- MDS UK Patient Support Group and Teenage Cancer Trust”, says Ted.
MDS UK provides an array of support for MDS patients and recently funded its first research project, aiming at repairing damaged DNA in blood cancer. This would have positive implications for all blood cancers.
“Teenage Cancer Trust’s special hospital wards, nurses and youth support teams provide patients with emotional and practical support to get them and their families through some unimaginably hard times”, says Helen Farquharson, Senior Fundraising Manage at TCT.
“Romain is currently on a Teenage Cancer Trust ward” says Christine Peel, Romain’s Grandmother. “As well as supporting Romain, the charity’s staff there have been helpful, giving his Mum information, advice and directing her to support services. Their support has been invaluable.”
Both organisations need more financial support to ensure other patients have an easier time, especially during Covid19, which has seen the demand for services increase.
“We also urge more people to become stem cell donors, especially those from ethnic minority communities”, says Ted. “We would like to see a future where every blood cancer patient has a donor available and where cost is not an inhibiting factor."
It is only with this generous and selfless support that the care and treatments for blood cancer patients continue to be provided and improved.
MDS UK and Teenage Cancer Trust would like to wish both Grandfather and Grandson a safe and smooth procedure and speedy recovery and say a massive thank you for sharing their stories!
To donate to MDS UK and Teenage Cancer Trust, visit the campaign VirginMoneyGiving page on: https://uk.virginmoneygiving.com/TedRomain
For queries about MDS, familial MDS, or general enquiries, email email@example.com or call 020 7733 7558.
You find other ways to donate on our website: https://mdspatientsupport.org.uk/fund-raising-2/donate/
For more information on Teenage Cancer Trust and to donate, go to: https://www.teenagecancertrust.org/
To read Ted and Romain's full story go to: Ted and Romain: The full story
If you are interested in fundraising for MDS UK or have any related queries, contact Jan Edwards on firstname.lastname@example.org
Connor, Ben, Joe and Jeff will walk the 37 miles from Ashford to Ramsgate!
Connor Stalker and Ben, Joe and Jeff Watson will be walking 37 miles from Ashford to Ramsgate to raise vital funds for MDS UK!
Gardener Connor, who is just 23, met our Chair Ted Peel and his wife Christine when attending to their garden.
After befriending the couple and hearing about Ted’s struggles with MDS, Connor was struck by how the disease affects patients and their loved ones.
He showed his three friends MDS UK’s information booklet and they decided to turn their planned walk into a fundraiser for our cause.
Starting at 7:30am, they aim to reach Ramsgate by 17:30- a 10 ½ hour walk. Between them, they hope to raise a massive £1000 for our life-changing work!
“I believe every life matters and I’m tired of seeing people pass away too soon. I want to give something back as Christine and Ted are good friends of mine.
I just want to do something. I want people to realise that everyone has their own struggles and to make the most of what you’ve got because it can change so quickly.
I always try to keep smiling, help people along the way and treat others as I want to be treated.
If I can save even a few people, then that would mean something to me.”
Connor and his friends need your help! With the donations of generous supporters, their target can easily be reached and surpassed.
Please go to the event JustGiving page on https://www.justgiving.com/fundraising/connor-stalker to donate as much as you possibly can!
Thank you so much Connor and friends for deciding to help us in this way! You’re amazing!
Unorganised events like this are essential at a time where most of our fundraising events have been cancelled due to Covid19.
If you have a similar fundraising idea and would like to discuss it, please contact Jan Edwards (Fundraising Officer) on email@example.com.