Donation Gallery Archive | MDS UK Patient Support Group

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In Memory of Tom Topping

Posted on 09/03/2022 at 11:32 am.

It’s been nine incredibly tough months since for us all individually and as a family however one thing that we will never let fade is the amazing memories of our dearest late Husband, Daddy and Nanda; Tom Topping.

It turns out Tom/Daddy/Nanda had a rare blood cancer called Myelodysplastic syndromes. Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. The annual incidence of MDS is estimated at 4 per 100,000, but incidence increases with age. Tom/Daddy/Nanda had only turned 70 when he was in hospital.

We had all guessed there had to be an underlying issue somewhere. A seemingly fit and healthy man couldn’t just pass away in what seemed like the blink of an eye. Unfortunately though with this disease he did so as other infections took their toll and we never got to find out what that underlying issue was until just recently.

When Tom/Daddy/Nanda was in hospital we didn’t avail directly of any cancer support services however as a family would like to help raise awareness of Myelodysplastic syndromes (MDS) and to do that we will fundraising for two related charities namely Leukaemia & Lymphoma NI (LLNI) and MDS UK Patient Support Group. Our goal is to raise a minimum of £1000 for each charity.

Leukaemia & Lymphoma NI (LLNI) funds research into the causes and cures of leukaemia, lymphoma, and myeloma right here in Northern Ireland. The LLNI research strategy is based on the study of cancers that develop from blood stem cells. The charity aims to improve our understanding of the causes and the factors controlling their development and progress by laboratory studies.

MDS UK Patient Support Group provide Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes throughout the UK and Northern Ireland.

Over the next few months we will be running a number of fundraising events as a family culminating in a Marathon run at the Belfast City Marathon on Sunday 1st May 2022 by Toms youngest son Adam. We hope you will support us in our fundraising efforts.

Please see attached a link to our Official fundraising page. Alternatively you can pass any donations to either Carol, David, Kelly, Gary or Adam.

Thanking you in advance,
The Topping Family

In memory of my wife Elaine

Posted on 09/06/2021 at 10:28 am.

Written by Manuela Rotstein

In memory of Carlos Ballester Fernandez

Posted on 09/06/2021 at 9:13 am.

Written by Manuela Rotstein

Carlos Ballester Fernandez went too soon on 7th March 2021.

He is desperately missed by Catherine after 52 years of love and happiness, by his beautiful sons Xavier and Julian who gave him such joys as well by their lovely Olivias, by his grandson Jack and by all his family and friends which he cherished.

Catherine shared with us:

"Little Jack was a gorgeous birthday present last year just before the pandemic. Carlos adored him. Jack brought him such ray of sunshine in the bleak shielding restrictions of this past year.

We all look forward to a not too distant future when we can be together to celebrate all the happiness and love Carlos gave us."

In memory of Guy Rouquette

Posted on 09/06/2021 at 8:29 am.

Written by Manuela Rotstein

Guy, my husband, was diagnosed with MDS over 10 years ago at the age of 64. He also had a kidney removed around the same time. He died on December 31st 2019. I am very pleased to be invited to tell his story.

Guy was well until about 2 years ago when his health began to fail. He became Chairperson of the Bournemouth MDS meetings when they first began some years ago and became very knowledgeable about the illness.

Together with the other coordinators, Tess and Gordon, he organised talks from experts in the field and shared knowledge with the group during the Group discussions.

The sharing of experience and knowledge among the group at the beginning of the meetings has been really useful, especially for new people who can often be overwhelmed by their diagnosis. The discussions are generally very positive and informative about both MDS and peripheral issues.

Guy kept his accent and his french style of driving, but also his Gaelic charm and humour

I am not sure if Guy was an easy patient as he was inclined to “interview” his medical team and would always have his spreadsheets at the ready and discuss at great depth any decisions made. He certainly took an active role in his treatment but he learned to trust and respect Dr Killick and her team.

Guy was French but had lived in various places due to his work as a banker, Brazil, San Francisco, Texas, Brussels and London to name a few. He kept his accent and his french style of driving which was quite frankly terrifying but he also retained his Gaelic charm and humour. He ended up in Bournemouth when he met me and we married.

Despite his illness and during his illness Guy continued to pursue his normal activities. He was a keen tennis player and was in charge of the Tennis Committee.

He became a governor to the board at Bournemouth hospital and chaired the Steven James Practice Charity which helps those whose lives are affected by addiction. He worked hard at all these activities, taking his role seriously and contributing much to their success.

He also partook in unexpected activities. He joined a U3A movie making group, acting the main role in a film shown at the Shelley Theatre. Again through the U3A, Guy took up various subjects such as Latin, Philosophy, Introduction to Opera, Roman History and Politics.

Guy was always interested in learning and had a somewhat unusual approach to the arts. He believed that if you could type you could play the piano – he couldn’t! but he learned to read music. We went ballroom dancing and didn’t really progress beyond beginners but we had years of fun trying. He was an academic at heart more comfortable with theory than practice.

As a person, Guy was kind, interested and interesting, generous, funny and clever. He had the great character asset of allowing people their own autonomy. He never dreamed of interfering in someone’s life or telling them what to do. He was honest, open and fair.

Guy had a tough year with hospital stays and treatment this last year. His son and myself were with him when he died very peacefully on New Year’s Eve. He will be much missed but his legacy is in the strength of the organisations he helped and the people who loved him.

Ron Holder’s “Twice a Refugee”: Incident during the escape from the Belgian Congo

Posted on 17/03/2021 at 2:28 pm.

Written by Manuela Rotstein

This book was originally destined for family and close friends, but the reaction has been such that it might find a wider readership.

To this end, together with my wife Lin, I decided to print a further number of copies to be sold as a donation to the MDS UK Patient Support Group as my small contribution towards their fundraising.

I am not an author and I have never had any help or guidance in writing this work, so it may seem very unpolished to some.

Stay with it. Enjoy the journey.

Ron Holder, 11th January 2020

I soon reverted to Swahili; this I spoke fluently with the local accent. I asked for free passage through the roadblock and was about to be given it when the sound of an approaching truck brought the rest of the gang onto the road from a makeshift camp in the trees. Now there were around twenty-five men, most having guns of some sort or other and all with machetes. As the 10-tonne lorry approached I could see that it was an Arab trader’s vehicle piled high with all he was trying to save. The cab had three men, besides the driver and a group of seven or so women and a number of children piled on the open back amongst the household effects.

The lorry stopped and the driver got out shouting for the barrier to be removed so they could go on their way. An argument ensued where the rebels asked for an astronomical amount of money so that they could proceed; the Arab was not willing to even discuss payment. Walking back to the truck shouting his intention of forcing his way through the barrier, he did not get very far before he was shot in the back. Another of the men in the cab moved to the driver’s seat and with the engine still running engaged a gear and floored the accelerator. The lorry lurched forward but it was so overloaded it made slow progress and made an easy target for the rebel’s guns. The lorry kept moving forward, smashing into the barrier, but its driver was either dead or very badly injured because the vehicle veered off the road and crashed into the back of one of the other lorries abandoned by the side of the road, it came to a halt.

At this moment all of the rebels ran to the lorry and before the women and children could flee, they were rounded up and a small group held them captive. There was more gun fire as the men in the cab were dragged out onto the ground and executed. There was nothing I could do to help; I had seen how they had shot the men with no mercy and from previous trips through this area I knew the fate of the women. When they had finished with the women, their bodies would be dragged to the lake and left on the beach for the Crocodiles and other animals to erase all traces. I took this diversion to make my escape and proceeded as fast as I could, expecting a bullet at any time, fortunately they were otherwise occupied and I got away. The road from this point on was uneventful until I reached the village of Mboko about halfway to Uvira.

I knew this village well, as I had been working here just over a year previously when I was working for SOPELTA a fishing company. Our campsite was down by the lake some 500m from the road. I had spent many evenings after work in the village talking to the village chief, school teacher and others. I stopped in the centre of the village to give my tired and torched body a rest and take a well-deserved drink of water. Within minutes I had drawn a crowd, and they greeted me like a long-lost friend and I was asked to sit in the shade under the eaves of the chief’s hut. After exchanging greetings, the Chief told me I had a problem about 5km further along the road.

There was a band of rebels who had set up a roadblock and were looting, raping and killing travellers. He and these fellow villagers had been terrorised and were afraid of what they would do to them should they try to intervene. I thanked him for his warning but I was not going back and I told him to pray for my safety. Setting off with this warning ringing in my ears I drove on up the road.

The barrier this time was not a tree but abandoned vehicles, cars, pick-up’s and trucks strewn across the road with well-armed rebels sitting in the shade on seats ripped from the vehicles. As I approached, they roused themselves and took up aggressive poses. When I came into full view and saw their reaction it was one of surprise, they roared with laughter, some were laughing so much they had tears running down their faces. I stopped and dismounted, again offering the Kebembi greeting, and then in Swahili I asked what was so funny? The leader, a small middle-aged man, told his men to be quiet, then he walked around me and the scooter before stopping in front of me and pointing to the scooter asked where I was going on this toy. I told him “To England”. This set everybody off into hysterical laughter again.

One of the rebels stepped forward and announced he knew me from my days with the fishing company. He told them that he had worked for me as a guard on the fish lorries; he also told them that I had often purchased a leg of goat at the market and given it to him to share amongst his village. He told the rebel leader I should be unharmed and left to go on my journey to England.

“Twice A Refugee” - an extraordinary book by Ron Holder, tells his gripping, factual account of being a refugee twice in his life. The incredible, poignant social history is testament to Ron's strong character and self-belief.

Ron was born to devout Christian missionary parents in China during WWII. The family fled the advancing Japanese army by flying over the Himalayas in an unpressurised cargo plane by the US Airforce, arriving in India as refugees. Placed in a boarding school at age just 4 1/2 so his parents could continue their missionary work in China, his childhood became one of bitterness and resentment.

At just 15, Ron was taken to The Belgian Congo to learn about his parents' religious devotion and commitment. 4 years of adventure, which culminated in The Congo's Independence and its descent into civil war, resulted in Ron becoming a refugee again. These years of self-reliance equipped Ron better than any academic qualification could have.

Both Ron's loving wife Lin and MDS UK hope you enjoy this remarkable story as much as Ron enjoyed writing it. It really is a wonderful read, and a bargain at £12.00 plus P+P!

To order your copy:

Please email kentgroup@mdspatientsupport.org.uk
Please include your postal address.
The P+P costs for UK addresses is £1.99 per copy, but for other countries it will be higher. When you email Andy to request your copy he will confirm the exact cost of P+P based on your location.
After having emailed as above, and received a reply, it is then simply a matter of donating the suggested sum on the book’s JustGiving page and we will mail you the book.

You can of course also donate without purchasing the book if you wish! Many thanks if you choose to do so

MDS UK is the only charity solely dedicated to helping those with Myelodysplastic Syndromes and their loved ones through pioneering research, a helpline, specialist speakers and more. We are a small charity that needs your support!

MDS is a blood cancer and bone marrow failure disease. Approx 2500 patients are diagnosed every year with MDS in the UK. The causes are mostly unknown and the average age at diagnosis is around 74 years old. Aplastic Anaemia shares features of this disease, but can affect patients at much younger ages too. Symptoms of severe unusual fatigue or repeated odd blood counts results are some of the signs to watch out for, and require further investigation by haematologists. Please always consult your GP in good time.
More information on MDS and ways to contribute: www.mdspatientsupport.org.uk

MDS UK would like to thank Ron Holder, who was determined to raise vital funds for us despite his illness. You’re an inspiration and are sorely missed! We would also like to thank Lin for helping to publish the book and for remaining a vital part of our fundraising community.

Ron Holder’s “Twice a Refugee”: My last day at school

Posted on 17/03/2021 at 11:51 am.

Written by Manuela Rotstein

This book was originally destined for family and close friends, but the reaction has been such that it might find a wider readership.

To this end, together with my wife Lin, I decided to print a further number of copies to be sold as a donation to the MDS UK Patient Support Group as my small contribution towards their fundraising.

I am not an author and I have never had any help or guidance in writing this work, so it may seem very unpolished to some.

Stay with it. Enjoy the journey.

Ron Holder, 11th January 2020

At long last the great day arrived and my last day at school, I was finally to be set free. The old school song still comes to mind:

This time next week where will I be,

Out the gates of misery,

No more Latin, No more French,

No more sitting on a hard-old bench.

The last day was quite memorable, the day started as usual, but I refused to comply with the morning prayers, the housemaster Mr Ridges did try to enforce the rules, but this had no effect on me. Today was my last day at the hated place and by 2 p.m. I would be on the train and away forever. The school bell went at 9 a.m. but we did not file as usual to the morning service, we hung around our classrooms tidying our desks, I binned all my text books and anything else that would remind me of school. The previous night I had cleared out my locker in our common room. In the days leading up to the end of term the staff had packed all are clothes along with anything we wished to keep, and our trunks had been sent on by rail. Mine to my Aunt Joan’s in Putney, where my parents were living during their furlough. Father could not collect me as he was in Belgium studying French.

At 11.00hrs the whole school assembled in the gym for final assembly on this the last day of the school year. This was the only time the whole school was combined; there was not enough room for seats so we all stood in rows in our class groups. The headmaster and head mistress proceeded to go through the year’s achievements and present the cups for the top ‘house’ to the house captains. This was a cup that was awarded for the most successful house in all disciplines for the whole year. Each sport has its own individual cup or trophy and each had a score for first and second place, each term had a work shield and an overall shield for the year. Pupils could acquire plus or minus ‘work’ points for their house by good or bad behaviour or good or poor academic results in lessons or exams. The house system had always been the big incentive to perform to your best ability so as not to let your house down.

I was singled out as an example of a school record breaker, I had gained zero in my French examination, after three years’ study, and this attracted ten minus points. However, I did attain 100% in RK (Religious Knowledge) and this attracted 10 plus points. I had also accumulated the most minus points overall of any pupil in a school year. Well done me, and I did not give a toss. Our ‘house’ still won every sports trophy; cricket, basketball, rugby and athletics for the third year running. These together with the work shields ensured we yet again were overall ‘top house’. My house captain was head boy Claude Scott, the older brother of Bernard. A few years ago, I was idly scanning through Facebook and put Claude’s name into a search, up popped a face I recognized. The note stated that Claude was now retired having been the head of a secondary school in Norwich.

I bid farewell to my classmates and those teachers who were still talking to me and I made my way to the house mother’s office to collect my train and bus pass. My small case was packed and I made my way to the station with my sister Betty and others who were traveling to London.

I was free at last!

This was the end of my school days, the supposed ‘best days of my life’. A time when I should have been set up for my future life and I should have at least had some idea of what I intended to do to make a living, but I had absolutely no idea. I had wasted a golden opportunity as academically this school was brilliant. Had I attended as a day pupil; things may well have turned out very differently.

Both Ron's loving wife Lin and MDS UK hope you enjoy this remarkable story as much as Ron enjoyed writing it. It really is a wonderful read, and a bargain at £12.00 plus P+P!

To order your copy:

Please email kentgroup@mdspatientsupport.org.uk
Please include your postal address.
The P+P costs for UK addresses is £1.99 per copy, but for other countries it will be higher. When you email Andy to request your copy he will confirm the exact cost of P+P based on your location.
After having emailed as above, and received a reply, it is then simply a matter of donating the suggested sum on the book’s JustGiving page and he will mail you the book.

You can of course also donate without purchasing the book if you wish! Many thanks if you choose to do so

“Twice A Refugee” by Ron Holder

Posted on 13/01/2021 at 2:04 pm.

Written by Manuela Rotstein

This book was originally destined for family and close friends, but the reaction has been such that it might find a wider readership.

To this end, together with my wife Lin, I decided to print a further number of copies to be sold as a donation to the MDS UK Patient Support Group as my small contribution towards their fundraising.

I am not an author and I have never had any help or guidance in writing this work, so it may seem very unpolished to some.

Stay with it. Enjoy the journey.

Ron Holder, 11th January 2020

Ron, who was dyslexic, set about writing up this unusual story of his formative years for his family and close friends only.

In May 2018 he was diagnosed with the rare blood cancer ‘Myelodysplastic Syndromes’ (MDS). Both Ron and his wife Lin became regular members and supporters of the Kent MDS Support Unit. He wished to see the book in print, with all proceeds benefiting the charity and patient support group MDS UK.

Sadly, Ron's condition deteriorated and transformed to Aplastic Anaemia. Both these conditions are bone marrow failure diseases and can overlap.

Ron lost his battle with Aplastic Anaemia in January 2020. His beloved wife, Lin Holder said: “The focus since his diagnosis in May 2018 was to finish this book and to see it in print. He achieved this in August 2019 and was delighted with the feedback he received from those who had read it so far. Hope you enjoy it too.”

Both Ron's loving wife Lin and MDS UK hope you enjoy this remarkable story as much as Ron enjoyed writing it. It really is a wonderful read, and a bargain at £12.00 plus P+P!

To order your copy:

Please email kentgroup@mdspatientsupport.org.uk
Please include your postal address.
The P+P costs for UK addresses is £1.99 per copy, but for other countries it will be higher. When you email Andy to request your copy he will confirm the exact cost of P+P based on your location.
After having emailed as above, and received a reply, it is then simply a matter of donating the suggested sum on the book’s JustGiving page and he will mail you the book.

You can of course also donate without purchasing the book if you wish! Many thanks if you choose to do so

In memory of Caroline Wright

Posted on 02/12/2020 at 4:02 pm.

Written by Manuela Rotstein

Caroline was a great example of how to gather your energies to pursue what you felt was right, and a true friend and supporter when times were tough. She got a lot of encouragement from the MDS support group and gave encouragement too.

Last year, after asking her sister to run for MDS on her behalf she managed to get to the Great North Run, a first for our charity at that event. It was a beautiful day for the race, and you could see how much Caroline loved meeting with Russell and other MDS people she had come to know. She had a wonderful weekend and loved being part of the event and treasured the GNR medal given to her.

Every person lost to MDS is a tragedy, and especially so when it is someone you have known and loved. Caroline has left a great gap in the lives of her family and she is a force we will all remember, for her strength of spirit, her courage to challenge what this awful disease brings and a brave wit which always brought a smile. She had an abundance of hope and that hope is something we will never forget.

Rest in peace dear Caroline.

In memory of Bev Nye

Posted on 26/06/2019 at 11:27 am.

Written by Manuela Rotstein

We are very saddened to hear about the passing of our dear member Bev Nye.

Bev and his wife Janet were active volunteers and contributed enormously to the wellbeing of other MDS patients by starting the Derbyshire Local MDS Group. We will miss him badly.

Bev and Janet shared their story with us for our Newsletter back in 2015. You can read their story here.

Their daughter Rosemary has set up a Memorial fund to remember and honour him.

Here are her moving words:

Dad had MDS, a rare blood cancer which transformed to acute myeloid leukaemia this january and sadly passed away on the 14th of June 2019.

MDS UK was a great help and comfort to Dad and Mum as he battled this condition over the last number of years. He was always full of fun and positivity and fought so hard to beat the cancer, he will be sorely missed by everyone.

He wanted to support the charity as much as he could so asked that people donate to MDS UK instead of sending flowers for the funeral so we have set up this page to that end. Please help support the charity which gave him so much support.

Love you always Dad you are our hero who could fix almost everything, you will always be our sunshine, our hairy gorilla, bouncy tigger and yellow banana shark, your trusty assistant / youngest daughter.

Anglia MDS Support Group

Posted on 26/06/2019 at 11:07 am.

Written by Manuela Rotstein

Tom Topping, a loving Husband, Father and Grandad

Our deepest condolences to Tom's family and friends. We thank you immensely for remembering us and fundraising for us in Tom's memory. All the funds raised will help us more patients and families affected by MDS.

Elaine and Kevin Peter Izod

Our deepest condolences to Elaine's family and friends.

We thank Peter and their friends for these funds that will help us assist more patients and families affected by MDS.

Our deepest condolences to Carlos's family and friends.

MDS UK has received generous donations in memory of Carlos Ballester.

We thank his wife Catherine and friends for these funds that will help us assist more patients and families affected by MDS.

My husband Guy Rouquette

Guy kept his accent and his french style of driving, but also his Gaelic charm and humour

Guy was kind, interested and interesting, generous, funny and clever

Our deepest condolences to Guy's family and friends. We are immensely grateful to them for choosing MDS UK as recipient of donations in her memory.

All donations will go to ensure that MDS patients and families receive the attention and information we can provide to help them deal with the condition.

Listen to the second excerpt of Ron Holder's "Twice a Refugee"

Ron with his friend Shar in Mombasa

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Listen to the first excerpt of Ron Holder's "Twice a Refugee"

Ron with his family, at 9 years of age. His parents returned to the UK on furlough from China

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Listen to these two excerpts of Ron Holder's "Twice a Refugee"

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