Sunday, 31 March 2013



There is one simple choice to make as soon to be parents, disabled or not! Do you cut your babies umbilical cord ,rich in stem cells and throw it in the bin or ask for it to be preserved and donated to potentially save many lives where you live?


I am writing to ask if there is just one person reading this blog who is expecting or who knows someone who is, to get them to tell their gynaecologist that they would like to donate their new born's umbilical cord blood to the NHS cord bank. The doctors will sort it out from there and you need do no more except for pushing your wish at appointments! There is no paying for donation involved unless you are asking a bank to store stem cells for your specific purposes! There will be similar schemes running all over the world, google it,facebook it, or leave it up to the doctor to do but let them know your intentions in good time and not at the time of birth as the cord needs to be frozen immediately and rushed to the cord bank. It really is such a simple statement to make at your next anti natal visit and it could save potentially hundreds of lives!

I have taken the facts on donation from

Cord blood fundamentally has the potential to help treat children and adults suffering with:

Lukeamia and other cancer malignancies such as lymphoma

Sickle cell disease and other diseases of blood cells.

Immunodeficiancies- where the auto immune system is faulty such as it is in childhood systemic Juvenile arthritis, JIA which ,as I keep saying, is nothing like old persons arthritis which is wear and tear of a few joints over many years of use, JIA is where the auto immune system turns on itself and eats the owners joints and sometimes organs in a matter of days.

Metabolic disorders- Where the body can not get rid of waste products.


There is a lot research going on in the use of stem cells, some scientists believe there is real potential to grow new bone matter and make natural bone joints so as long as the stem cell product matches the recipients then the need for plastic hips at my young age of eleven years old, could be a thing of the past.


Few scientists are interested in is cloning sheep and humans! I would doubt that there is a massively funded market for anyone planning on researching cloning of humans ! I therefore struggle to understand the religious argument against stem cell research.This is not a case of man playing God, this is simply medical science helping to save lives and enhance modern society productivity as many diseases could potentially be eradicated with stem cell transplanting. As a child with JIA I have had to undergo trial drugs that involve extensive, painful, tests to see if the medication worked. I was a human guinea pig because I was so very ill and my parents, out of sheer desperation, had to try something but they also had to watch me go through the pain of the trial. Those drugs are now used today as a first port of call in treating young children with JIA, many children and adults now live normal lives, they play football,can run around and have grown normally. I was and still am treated with steroids along side the modern medications but it is too late for me, I have not grown properly, I have short limbs and the effectiveness of steroids over the seventies and eighties has not had much effect on protecting my joints from permenant degeneration. I am thrilled that others have been helped through me and my friends going through trials but what we went through was invasive in order to get treatment updated for the modern generation.Stem cell/umbilical cord donation could transform lives without anyone needing to go through pain in the future. Where is donating something that has to be cut off the baby anyway, ungodly, the bin gets given more stem cells than humans in our hospitals!


I want to share with you the story of little Charlie Harris-Beard, a ten month old who was diagnosed with acute myeloid leukaemia.I want to thank Charlie's parents for allowing me to use his story, it is a very emotional story,please take a few minuets to think about this and if I can make any difference please get the message out to others,friends,family expecting babies. Go on the links at the bottom of this blog post, find out more about making a change.Charilie was just ten months old when he got diagnosed with acute Myeloid Leukameia. As a baby he was given four rounds of chemotherapy which did not work and left him incredibly sick. Charlie was given three months left to live,doctors suggested his only way of survival was through a bone marrow transplant which is effectively a stem cell transplant. Can you imagine the terror in his parents as they wondered whether or not their child would find a match in time? Lets face facts, few adults volunteer to go through the pain of bone marrow donation and it takes special, saintly people who do,yet no one need go through that pain if every mother in the UK donated their new borns umbilical cord, rich in stem cell blood! Fortunately Charlie's parents had the good sense to do all they could and they appealed for donations through their Facebook page- Cords4Life:Charlie's Legacy ,which was set up to raise awareness of cord donation and not only help Charlie but thousands like him.Charlie's parents found a match!! This little chap went from a gravely ill child, sick, weak, unable to walk ,yet upon receiving the transplant ,he took his first ever steps at Birmingham Childrens hospital! Things started to look up, Charlie had energy and was enjoying life up until he sadly relapsed a few months later. Back at the old chemotherapy, there seemed to be a glimmer of hope,he seemed well enough to undergo another stem cell transplant but unfortunately he got very sick and too ill to undergo it. His parents were told that Charlie had weeks left and there was no more that could be done for him in the UK, a story so often heard by so many of us who have severe illness. His parents ,still fighting for Charlie who was fighting for his life, went to seek international help and knowledge, they found out about a trial but before he could have the treatment their baby had to go through painful and invasive tests to see if he could be a candidate. He was able to be administered the treatment but the drug failed. Never quitting, his parents and Charlie returned home and continued to look in every corner of the world to find help, they found another experimental treatment. Meanwhile their Facebook page soared through many readers hearts all of whom had read about Charlie's plight and all were desperate to know how and where they could donate their baby's umbilical cord. Sadly Charlie got Pneumonia and became too ill to start the new medication, his parents kept on fighting and sent out a petition to the UK government to ask that awareness and availability of umbilical cord donation be improved. The same day the petition was approved, 8th of Feb 2012, Charlie sadly passed away.


I know his parents would want to get Charlie's legacy out there, to make others aware of umbilical cord donation, to give countless children in the UK today, who are waiting for a bone marrow donation and a match, a chance at life. The only way medics can be sure matches are found in time is by having countless donations available. This is not just about saving ill children, if we want to get down to nitty gritty politics or someone is feeling all a bit Tory and wondering how much cord donation costs the tax payer, well lets imagine a world where disabilities and illness is irradiated! All those suffering become treated with powerful stem cell replacements and able to be employed in any job, no restrictions, no permanently deformed joints or failing organs ,no "limited capacity to work groups" nonsense etc. A world where illness and disability no longer exists and there is no need to fight for equality,a world where tax payers money no longer has to support those not able to work.


Charlie's story is particularly close to me not just because I have been an ill child and am a physically disabled woman but because I am a mother. I never thought I could be a parent after having had chemo meds all my life and not grown properly,most of me bionic etc. I am proud to say I am a mother to a healthy two year old who I never take his health for granted. At any moment our children can get seriously ill.I got JIA aged 15 months through chicken pox that sparked my immune system to turn against me, the same happened to Max Cliffords (News of the World editor) daughter, children absolutely healthy can suddenly turn eight and get leukaemia like Garry Liniker's daughter, athletic people in their twenties can drop down with heart failure. Scientists are working on making new organic matter hearts using stem cells,they are building new joints with stem cells so severe physical limitation may be a thing of the past but above all stem cell transplants are giving the dying a chance at living. There are hundreds of thousands of reasons why umbilical cord donation must happen now!


Ask yourself, can you so certain that severe illness will not hit your family to not be bothered by this issue? Illness happens to millionaires children and the average Joes parents. What if one day your son needs a bone marrow transplant and sadly there just are not enough donations available to get the right match in time?

For more information about the issues covered in this blog post or to find out more about donation please go to the following links.

Web sites:

Facebook Pages:

Cords4Life:Charlie's Legacy

Raising awareness of umbilical cord donations.

Anthony Nolan (blood cancer charity).



Many thanks x





1 comment:

  1. Thank you so very much for sharing this information and story. I have re-shared and will continue to do so. My hopes are every country that has the capabilities would contribute.
    My best wishes to you for your work and dedication to bring information and awareness to the public!