Reuben is seven years old and is from Little Gomersal, West Yorkshire. He lives there with his parents Michelle and Peter and his younger sister Poppy.
Reuben has a form of Pure Red Cell Aplasia - a condition that affects a small number of children and specifically their ability to produce red blood cells. These are the cells that carry oxygen, so a lack of these cells causes serious problems for such children.
It is necessary for Reuben to have his blood levels monitored on a weekly basis. Unfortunately he has failed to respond to extensive treatment so far. Because he cannot produce his own red blood cells, Reuben needs regular blood transfusions in order to keep him alive. He will also need chelation therapy to counter the build-up of iron in his body (this can reach toxic levels, due to his inability to re-cycle iron as new Red Cells), which involves needles into his stomach and a drip attached for twelve hours each night.
Reuben's condition is yet to be completely diagnosed. In other words it appears to be unique, which makes the selection of treatment and assessment of the likelihood of success very difficult. The nearest recognised condition is Diamond-Blackfan Anemia (DBA). There are around 700 confirmed cases of this condition worldwide, with around 60 of these in the UK.
After not responding to any drugs or treatment the medics virtually gave up hope. At this point his parents scoured the country and the internet looking for ‘alternatives’. Having tried many unsuccessful alternatives, they finally found a nutritionist in the UK, who said she would take on Reuben’s case. The family self-funded a series of tests and then put Reuben on a permanent course of approximately fourteen supplements, under the guidance of the nutritionist. After 18 months and a gradual reduction in the frequency of transfusions, Reuben has finally become transfusion free.
Whether this is as a result of the supplements or a spontaneous remission (which is extremely rare in Pure Red Cell Aplasia patients), is yet to be determined. On the success of Reuben’s case the family have encouraged other children in a similar situation, to try this route, however, it is still early days, and most of these patients are steroid dependent and therefore this may have an effect on the results.
However, Reuben still requires regular hospital trips to have his blood levels monitored as currently there is no conclusive medical information to say Reuben is ‘cured’ and there is still a possibility he could relapse at any time. He also has a number of other problems, though these are thought to be independent of the Anemia and as such require less intensive treatment. The hope is that the charity could find a way to investigate this route further, once more data has been gained from other patients. This could take a number of years but research of this kind can only go as fast as the suitability and dedication of future patients become available.
Peter, Reuben's dad, gave a summary of the course of Reuben's progress to the 2007 conference of the DBA Association. To download a copy of this, click on the link below. To view the document, you may need to install the Acrobat Reader, a link to this is also below.
My role is: To put up with all that is asked of me and to keep growing and fighting, while those with my interests at heart work things out for me.
Background: Born at Dewsbury hospital and spent too much time at various hospitals ever since. I do have a thing for hospital food though (which doesn't say a lot for Mummy’s cooking).
Alternative career: Budding dancing career, having been the star of one show so far (well, that’s what they told me anyway).
Favorite read: Star Wars, Horrid Henry.
Person I admire: Sam Hartley.
Biggest achievement: Obtaining "Star of the Day" status at school after less than 100 attempts.
Philosophy: Love your parents, but at the same time take them for the mugs that they obviously are.
My role is: Driving my parents and everyone else to distraction. I am known as the ‘Angel with a Fallen Halo’
Background: Lifelong side-kick to my older brother. He knows that he is not having things all his own way for much longer though, as I have been making some serious strides of late to get my own back.
Alternative career: Ladies boxing and working hard on developing my very own, unique language. I was hoping that it would catch on, but no-one seems to understand me.
Favorite read: Usborne Farmyard Tales, by Heather Amery and Stephen Cartwright (you really should try them – I can’t put them down myself).
Person I admire: Sam Hartley
Biggest achievement: I once ate almost half of my dinner at one sitting.
Philosophy: Get your retaliation in first.
My role is: Proud Mother of Reuben and Poppy.
Background: How long have you got! Totally indecisive: Food Scientist (Chocolate Factory); Production Manager (Chocolate Factory); Marketing ( Biscuit Factory);...see a pattern forming... Teacher (Middle School); Numeracy Coordinator;Mother; watch this space!!
Alternative career: See Above!!! But main desire is to run a multi-million pound business, retire filthy rich and dedicate the rest of my time to finding a cure for Reuben.
Favorite read: Charlie and the Chocolate Factory - no links to previous jobs. Honestly!
Person I admire: Everyone at Reuben and Friends. They are the most fantastic, selfless, thoughtful, genuine, humorous, energetic, successful and ambitious people you could ever meet. That is truly an understatement.
Biggest achievement: Having such amazing friends.
Philosophy: Why cry when you can laugh instead!
My role is: To do whatever is required of me to support the great work being done by the group.
Background: Somehow ended up in Yorkshire after serving life’s apprenticeship in South Wales, but very happy to be here.
Alternative career: Doing what I am told.
Favorite read: The result in the newspaper the following day when Wales have beaten England at rugby (apologies to all my English friends, but it is the honest answer).
Person I admire: No one person, but anyone who takes time to do something for the benefit of others.
Biggest achievement: I have achieved nothing until I help to find out what is wrong with my son and ensure that it is put right. Then I can help others overcome similar conditions.
Philosophy: Do your best and you cannot fail.
Reuben and Friends is a registered Charity: no.
1108692
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