Opt Out

When we leave this world, we have the possibility now of automatically gifting our organs or tissue to people who need it, when we no longer require our body. It’s only really when you’re in a situation when people you love need some help from living donors, that the question becomes … why is it not the same for stem cell donation?

I guess it’s about the fact that you are very much alive when donating your stem cells. And while you are likely to be in the 90% who donate their stem cells via the peripheral method, which is more akin to blood donation, there is the chance, depending on the state of the patient, that you may be required to donate via an operation. This would be where stem cells are harvested from your pelvic bone and ultimately, when you sign up, this is a personal choice.

After seeing my son go through cancer and a stem cell transplant, knowing the strength of the chemotherapy drugs his eleven year old body at the time, had to endure; and knowing there are seven billion people in the world and around 60,000 - 70,000 people waiting for a transplant globally every year … wouldn’t it be such a great thing to have an opt out scheme for stem cell donation?

Ben had the possibility of three potential donors.

Three.

In a world of seven billion.

In my head, it would be simple. You’d be automatically registered at eighteen years old and remain on the register until you retired, or unless you became no longer eligible through illness or another unforeseen situation. Maybe there would be an option to opt out immediately if you felt you wouldn’t like to donate your stem cells or had an underlying condition that meant you couldn’t donate your stem cells?

The general point I guess I’m trying to make here is, if you, yourself became ill yourself and needed a stranger to step up to try and save your life, you’d ask someone to help, wouldn’t you? Therefore, why would you not agree to do the same for someone in return?

I appreciate it is a very personal choice and there may be a number of reasons why it might not appeal to some. I will be the first to admit that when I used to see the Anthony Nolan adverts years ago in the 1970s, I was petrified by the thought of an operation to help save someone’s life. As it turns out, many years ago, when I was born, I had difficulties myself; and had problems with my electrolytes and needed a lumbar puncture. When Ben had to have his lumbar punctures for treatment, I remember reassuring him by telling him mummy had to have that, too, albeit for a different reason. I always thought stem cells were taken from the spine, but I now know that to be incorrect.

Everything pales into insignificance when you are watching your child going through cancer and so, as you might understand, I am a great advocate for stem cell donation and am on the stem cell register myself. There are three main charities who help to bring more potential donors to the stem cell register. There is www.anthonynolan.org, www.bethematch.org and www.dkms.org.uk / www.dkms.org.us They all do an incredible job and whatever your background or ethnicity, you could potentially save a life.

I signed up with www.dkms.org.uk  who supported our family at the time with an appeal and they support a wider age range of people. This was very important to me and my husband, James, because we are in our late forties and wanted encourage as many sign ups as possible in our immediate network of family and friends.

Ben went through so much in those six months from diagnosis of acute myeloid leukaemia and Lyme disease, to coming home; and ultimately dying ten months after his transplant, following relapse. AML is aggressive and relentless.

For me, as his mum, I feel it is an important way to honour my son, by speaking up about this, in the hope that somewhere, one day, change for the better might become a reality.

So many people talk about children and adults going through cancer as the superheroes. It’s a strange feeling for me as a bereaved mum now with two living daughters and a son in a different realm somewhere. I almost feel the energy of a superhero is needed just to face the world some days, although my girls are amazing at keeping me focused and ever inspired, as is my son.

If there were more people on the register; if there was more awareness of the need for stem cell donors and maybe signing up might be offered as standard when you are giving blood. If this was a conversation we introduced to our young people when they go out into the world with all their ambition and creative spirit.

If the idea of stem cell donation became as much a part of our compassionate nature as organ donation is; and if even half of the seven billion of us that occupy this beautiful planet were on the stem cell register, then until there are alternatives for our children, our loved ones, going through this extraordinary experience, then this would be a truly amazing gift we are giving to those families waiting; hope.

So, if you’re reading this and you want to help make a difference, if you’re between the ages of 17 and 55 years old and are fab, healthy, happy and human, then please head to www.dkms.org.uk/becauseofben and sign up in our son’s name. If you’re not in the UK, then perhaps apply and mention you’re signing up because of Ben.

There is loads of information on the www.dkms.org.uk / www.dkms.org websites, talking you through stem cell donation and the process of what actually happens, if you are interested.

Here is the video we created recently for the #becauseofben campaign for DKMS; and I hope it inspires you.

https://www.youtube.com/watch?v=ZnAySiLRXlA

My very own little superheroes!