A few weeks ago I received a phone call from a neighbourhood acquaintance. Judi is one of those women who seems to always have it together. She has three little girls, works as an aerobics instructor, and has a great network of friends in the neighbourhood. She has been a great promoter of urbanmoms.ca to her friends and clients. When I got the call from Judi I knew something was not right. There was a sense of panic and determination in her voice that I instantly recognized.
Judi’s youngest, Nicola (pictured above), who is barely two, had recently been diagnosed with Aplastic Anemia. After noticing excessive bruising and other worrisome symptoms, Judi and her husband insisted that their doctor investigate further. The diagnosis was Aplastic Anemia and Nicola’s only chance is a bone marrow transplant.
The first to be tested were Nicola’s sisters. There is a high rate of success in sibling transplants but, tragically, neither of her sisters were a match. Judi and her family are now looking to the World Wide Bone Marrow Registry through Canadian Blood Services for a donor match.
Despite the many offers from friends, family, and neighbours, Canadian Blood Services does not allow one to direct a donation – meaning one cannot say they will donate specifically to Nicola. However, the more donations made, the higher the chance a match will be found and more donations will likely save someone else’s life down the line. There are 250 people in Canada without a bone marrow match. We are praying Nicola does not become number 251.
The process to become a registered donor is easy and by reaching out to her fellow moms, Judi is hoping to drive awareness and donations. By simply filling out a form and taking a blood test you could save someone’s life – you could save Nicola’s life.
Click here to join the bone marrow registry today. urbanmoms.ca sends our love and support to Judi and her family during this time.
If you know anyone who has been touched by Aplastic Anemia, please reach out to Judi and her family by emailing jen@urbanmoms.ca.
I now know kicking the habit will be very hard. I started smokes while I was 14 years old. It was the most horrible wrong move I’ve made. At present I’m much older and I have lung cancer. I sampled a pile of the stopping scams and yet not anything helped me stop. My last hope is the electric cigarettes in the end.
Alot of questions have come up regarding cord blood – and whether stored cord blood or cord blood which will be stored in the near future from the arrival of a baby would be of use in a situation such as Nicola’s. I have had to check these questions out carefully with the experts. It is my understanding that cord blood will be used more extensively in similar cases in the future. At present time, HSC predominantly uses bone marrow….although other hospitals are using cord blood more frequently. As we understand it – IF Nicola does NOT find a match on the bone marrow registry then cord blood would be considered….everything actually would be considered as we would be trying to save her life. If a parent has cord blood stored and wished to have it tested to see if it was a match for Nicola (or another patient) the facility would release a small sample for testing. As the chance of matching is so slight with a few cord blood samples vs. the registry – the route will be pursued after the Canadian Blood Services has done their complete search. A cord blood bank is kept at St. Justine’s Hospital in Montreal and with a little effort we have been able to send Nicola’s HLA typing there for comparison purposes. We will of course be thrilled if a match was found there.
I thank anyone and everyone who has made this very generous suggestion. If I am advised anything to the contrary I will write again.
Thank you to Sharon for registering… from your kindness a life could be saved.
Judi
I wanted to let you know that because of your article, I have registered to become a bone marrow donor. My heart and prayers go out to Judi, Nicola and her family. I hope they find a match!
Jen – thank you for your suggestion of cord blood. We also stored it for our two younger daughters – Christine and Nicola – we had not heard of it when our first was born. Regrettably, Nicola’s cord blood we are told would be of no use as her condition is most likely congenital. Christine’s was not a match and as such also not helpful for Nicola’s situation. We have been hearing a great deal about cord blood use in Quebec and have been advised by a few researchers that in the near future cord blood will become more and more prevalent in treating a variety of diseases. One researcher told us it will be the preferred choice within 20 years. As such, I feel it is a very wise idea for parents to be to consider storing it. We have discussed this a few times with our doctor at HSC. At present, their primary treatment for many disorders including Aplastic Anemia is bone marrow transplant.
We will however pursue it again and share your information regarding mothers to be and those who have it stored currently. I will write as soon as I get a definive answer on this option.
Many thanks for your interest and ideas, Judi
My thoughts and prayers are with Judi and Nicola. I will be sure to check out the info on CBS regarding bone marrow. My blood type is O RH Negative and I understand that my blood type is in high demand. I have also forwarded Judi’s plea onto friends and family.
Would a stem cell donation from cord blood help in this case? I know of a lot of women expecting in the next few months who may not be planning on collecting and paying for cord blood storage who may be willing to have it collected and used to help out your daughter if it would work. Please respond back if you would like me to reach out to them.
dear judi i just read your storie about your daughter and i want to let you know that 10 years ago i went to sign up to be on the bone marrow registery because i want to help save a life of a child because i don’t want a child to suffer or any body but even a child should not have to go thru an illness like this when they have alot of years a head of them,my blood type is RH O positive and im only 34 and i know any parent would give anything to see their childern grow up and live life to the fullest,my prayers are with you both.
Thank you for your comments and questions regarding Nicola and Bone Marrow Donation. I will address the ones so far…
Alice – I am surprised that BMI would be a great concern. Perhaps CBS is more flexible now. I will check further into this and write again.
N – unfortunately it is not quite as simple as blood – to be a match for a person one must match on 6-10 HLA – Human Lucocyte Antigens. First, CBS looks for individuals who have four HLA correct and then they contact those donors to see if any provide an even closer match. The primary reason why CBS does not allow this as per their website – is that it is too costly to test an individual just for one recipient. As a match is unlikely one to one – they have spent money and time testing and then the person withdraws from the registry. The best scenario for CBS and for persons out there hoping for a bone marrow match now and in the future is to increase the numbers on the registry from all backgrounds greatly. When any person/child needs a match – there will be greater odds of locating one due to the larger numbers of donors from a diversity of backgrounds.
Diane – you are correct. The preferred age for bone marrow donors is 17-50. It is very kind of you to check however.
Thank you so much for your comments and interest.
Judi
A couple of years ago, I had registered to donate bone marrow. I was active and fit, yet, my weight was higher than the recommended weight/BMI. Because of that, I was screened out completely, despite the fact that I was fit and healthy.
But, perhaps things are a little more flexible and I will try again.
All the best to you.
I have been a blood donor for 10 years. I have type O-RH Neg blood so I am a universal donor aka I can give to anyone. Is this true for bone marrow as well? Why can’t a person specify the recipient?
N
I thought the readers would be interested in knowing this. I went to the bone registry link to find out how to donate. I found out that you cannot do so if you are over 50 (I am 64)even if you are healthy. Perhaps there are other things we can do?
The more awareness generated by this the better! Thanks, Miche.
Jen
I’ve cross posted this with excerpts on my blog. Hope you don’t mind. If you do, e-mail me and I’ll take it down ASAP.