Hello everyone,
I wanted this post to be less media-like and more personal. I think that if you can really get a sense of what Nadia and her parents are going through, then it will be impossible for you to not want to help.
Also, regardless of your age there are lots of ways that you can help (which Tara discusses below), but the one thing that I am asking you is to register and please share this post with as many people as you can. Let's spread the word and raise awareness around the world together!
If you are in Vancouver (or know someone that will be) on February 2nd, 2014 then please attend this Swab Event / Marrow Donor Registry Drive in hopes to find a donor match for Nadia. As I said above, this is a life or death matter, and time is of the essence.
Here are the details for the event:
- When: February 2nd, 2014
- Time: 1:00 pm - 5:00 pm
- Location: Unit M44 - 970 Burrard Street (Burrard & Nelson), Vancouver, British Columbia, V6Z 2R4 Canada
Tara (Nadia's mother and my friend) took the time to answer the following questions, so please take the time to read everything below and help her family.
1. How did you first know something was wrong with Nadia?
Nadia came home from day care in July 2013 with this giant purple bruise on her tummy. It was one of those ugly black purple ones that looks like it should really hurt, but it didn't hurt Nadia at all. So that was a big clue.
Nadia had always been an easy bruiser since she was mobile, so for her to come back from daycare with a bruise, I really didn't think it was a huge deal, but I decided to make an appointment with her doctor just in case.
The doctor sent us for blood work the next day so we went in that morning got it done and was called in by our doctor by 1pm that day with the results. It showed that all of Nadia's blood lines were low, especially her platelets counts.
By 3pm we were in the car headed on a 4 hour car ride to BC Children's Hospital where there was a team waiting for us. The LONGEST 4 hours of my life. We were admitted to BCCH that evening and they started taking blood work and x-rays to help diagnose her.
We were there for a week, and the Hematologists were baffled a bit. There was no sign of cancer (thank-god) and she didn't show signs of classic cases such as Fanconi Anemia. They decided to get the geneticists involved. These guys were interesting, they took a detailed family history of both sides of our family. They took more blood and sent it off for a few specialized testing. One of them being telomere testing.
Telomeres are the end parts of your DNA, this was the key to what was wrong with Nadia. She had extremely short telomeres. As you age your telomeres get shorter, Nadia's were as short as a 90 year old, and she was diagnosed with Dyskeratosis Congenita, a disease that affects 1 in a million. Not something you really want to hear the Doctors say.
2. How long has Nadia been ill, and what have been Nadia's ongoing symptoms? Have they changed? Gotten worse?
Nadia was diagnosed with Bone Marrow Failure in September 2013 but the doctors feel that she has been in failure since she was born.
Her ongoing symptoms are bruising. Because she is in bone marrow failure, (because of her disease), her blood lines are all low, especially her platelets. They are sitting at about a 9 (9000 depending on how your hospital counts them). A normal healthy person's platelet count is usually between 150 (150,000) and up. Because of this, if she falls, she is prone to easy bruising and possibly internal bleeding.
She also has a low neutrophil count. This count is part of your white blood count, the important part that fights off infection and virus. So Nadia is immunocompromised. She can spike a fever super easily, even if she just catches a cold.
Since September her blood counts have been trending down and the only way to fix this is a Bone Marrow Transplant (BMT).
The BMT will only cure her bone marrow failure not her disease. That is a whole other kettle of fish that we have a list of things that we will have to be monitoring yearly.
I am going to be doing another blog post about Nadia's disease at a later date.
3. What has life been like for you and Thor (Tara's husband), and Nadia since you found out?
It was tough, and is tough.
It is extremely stressful having a VERY active toddler that has low platelets. You have to be constantly following her around and making sure that she isn't falling and causing major problems. It brings helicopter parenting to another level.
Thor and I never wanted to be parents that freaked out over our kids falling, but her situation is unique, so we have to watch her like hawks.
Plus it has been very isolating. We can't really go out to any play groups because of her immune system and since the H1N1 outbreak, I haven't really left the house.
I have become OCD about washing my hands and our house. We make sure that we use hand sanitizer after we have come home from being out, and every time I cough or blow my nose, my hands get washed or sanitized. Something I would have never really done before.
Anytime Nadia has a temperature, off to the hospital we go to get her bloods taken to make sure it isn't something more serious. Thankfully her tests have always come back negative.
We have limited people coming to visit. If they haven't had a flu shot they aren't coming through the doors of my house (Please vaccinate. It is so important not just for yourself but for people and children like my daughter).
If you have a cold you have to wear a mask, and we make people use the hand sanitizer when they come in and before they pick Nadia up.
4. What would you like others to do and know that maybe other media outlets haven't asked or included?
Just to get the word out about registering on the bone marrow registry.
Canadian Blood Services' OneMatch stem cell and marrow network registry (click here to register).
5. What information is key for others to know?
Right now we are asking people to register in their home countries for their bone marrow registries or donate blood.
Both are easy procedures and not as scary as you think it is, especially the bone marrow registries. For most countries it is a simple cheek swab.
Donating blood isn't as bad or scary as people think. Honestly if I can do it ANYONE can. ANYONE!
6. What is the situation of the Canadian stem cell registry? How does it compare to the world?
Canada is behind sadly, we were the LAST G8 country to open a public cord blood bank, this past year. Embarrassing to say the least.
Not only is it embarrassing, but it also costs Canada roughly $42,000 for cord blood from another country for a litre (and people complain about the price of gas!).
But we are in the process of opening up banks across Canada with donation centres in Vancouver Women's Hospital, Edmonton, Brampton, and two in Ottawa. So I urge any women that is having a baby in those hospitals to donate their babies cord blood, "Push Once Give Life Twice!" A saying that I came up with when they announced the collection site in Vancouver. I am thinking of getting T-shirts made. What do you think? (Tara, I honestly think that is such an awesome idea. If anyone would like to donate towards this, or in any way please contact me so that I can get in touch with Tara.)
7. Can anyone get checked and/or be a stem cell candidate?
You have to be between the ages of 17 - 35 in Canada (please find out your local age qualification), but you will be kept in the registry until you are 60 years old.
The reason for the age is this. There have been over 1 million stem cell transplants since the 1970's! 1 million! WOW. They have found over the years, that they have better results with younger donors. They are not being prejudiced, this is just the way it is and they have even better results with males, because male blood hasn't been contaminated by babies living in their bellies!
If you are a match for someone, and the best match, or in Nadia's case the ONLY match, they will call you regardless of your age and gender.
8. Is there any other way to help if you don't qualify as a candidate? What support do you guys need and what has been your biggest help to get you through all of this?
The best way that you can help is by encouraging someone who is in that demographic to join a registry.
As the worlds population gets more diverse, the more people we will need on the registry to match the needs of the population.
Not only are they doing stem cell transplants for people with cancers and blood diseases, but they are also looking into treating diseases with MS.
Science is pretty amazing.
9. How urgent is Nadia's situation?
Very urgent. She will die without this transplant and we are so lucky that we have partial cord blood match for her.
It is very urgent for MANY people, not just Nadia. I could list 100's of kids that are waiting for their match. It is heart breaking!
10. What resources are out there for parents who may be in your situation or going through something similar?
There are a lot of organizations out there. Here are a few that I have found helpful for information on BMT, and a link to an outreach group specifically for Nadia's disease.
It took me a few months to contact them as I didn't want to talk to anyone unless they had my daughter's matching marrow, but honestly once I did it was so great to reach out to other families. It made me feel like we weren't alone and everyone that I have been in contact with has had a wealth of information.
I encourage anyone who is going through a medical condition that is serious, to do a search on the Internet and see if they can find a support group. It has helped us tremendously.
If anyone has any questions regarding this blog post please email me at mynellybellie@gmail.com
Follow my blog with Bloglovin
"Act as if what you do makes a difference. It does." ~ William James
2. How long has Nadia been ill, and what have been Nadia's ongoing symptoms? Have they changed? Gotten worse?
Nadia was diagnosed with Bone Marrow Failure in September 2013 but the doctors feel that she has been in failure since she was born.
Her ongoing symptoms are bruising. Because she is in bone marrow failure, (because of her disease), her blood lines are all low, especially her platelets. They are sitting at about a 9 (9000 depending on how your hospital counts them). A normal healthy person's platelet count is usually between 150 (150,000) and up. Because of this, if she falls, she is prone to easy bruising and possibly internal bleeding.
She also has a low neutrophil count. This count is part of your white blood count, the important part that fights off infection and virus. So Nadia is immunocompromised. She can spike a fever super easily, even if she just catches a cold.
Since September her blood counts have been trending down and the only way to fix this is a Bone Marrow Transplant (BMT).
The BMT will only cure her bone marrow failure not her disease. That is a whole other kettle of fish that we have a list of things that we will have to be monitoring yearly.
I am going to be doing another blog post about Nadia's disease at a later date.
3. What has life been like for you and Thor (Tara's husband), and Nadia since you found out?
It was tough, and is tough.
It is extremely stressful having a VERY active toddler that has low platelets. You have to be constantly following her around and making sure that she isn't falling and causing major problems. It brings helicopter parenting to another level.
Thor and I never wanted to be parents that freaked out over our kids falling, but her situation is unique, so we have to watch her like hawks.
Plus it has been very isolating. We can't really go out to any play groups because of her immune system and since the H1N1 outbreak, I haven't really left the house.
I have become OCD about washing my hands and our house. We make sure that we use hand sanitizer after we have come home from being out, and every time I cough or blow my nose, my hands get washed or sanitized. Something I would have never really done before.
Anytime Nadia has a temperature, off to the hospital we go to get her bloods taken to make sure it isn't something more serious. Thankfully her tests have always come back negative.
We have limited people coming to visit. If they haven't had a flu shot they aren't coming through the doors of my house (Please vaccinate. It is so important not just for yourself but for people and children like my daughter).
If you have a cold you have to wear a mask, and we make people use the hand sanitizer when they come in and before they pick Nadia up.
4. What would you like others to do and know that maybe other media outlets haven't asked or included?
Just to get the word out about registering on the bone marrow registry.
Canadian Blood Services' OneMatch stem cell and marrow network registry (click here to register).
5. What information is key for others to know?
Right now we are asking people to register in their home countries for their bone marrow registries or donate blood.
Both are easy procedures and not as scary as you think it is, especially the bone marrow registries. For most countries it is a simple cheek swab.
Donating blood isn't as bad or scary as people think. Honestly if I can do it ANYONE can. ANYONE!
6. What is the situation of the Canadian stem cell registry? How does it compare to the world?
Canada is behind sadly, we were the LAST G8 country to open a public cord blood bank, this past year. Embarrassing to say the least.
Not only is it embarrassing, but it also costs Canada roughly $42,000 for cord blood from another country for a litre (and people complain about the price of gas!).
But we are in the process of opening up banks across Canada with donation centres in Vancouver Women's Hospital, Edmonton, Brampton, and two in Ottawa. So I urge any women that is having a baby in those hospitals to donate their babies cord blood, "Push Once Give Life Twice!" A saying that I came up with when they announced the collection site in Vancouver. I am thinking of getting T-shirts made. What do you think? (Tara, I honestly think that is such an awesome idea. If anyone would like to donate towards this, or in any way please contact me so that I can get in touch with Tara.)
7. Can anyone get checked and/or be a stem cell candidate?
You have to be between the ages of 17 - 35 in Canada (please find out your local age qualification), but you will be kept in the registry until you are 60 years old.
The reason for the age is this. There have been over 1 million stem cell transplants since the 1970's! 1 million! WOW. They have found over the years, that they have better results with younger donors. They are not being prejudiced, this is just the way it is and they have even better results with males, because male blood hasn't been contaminated by babies living in their bellies!
If you are a match for someone, and the best match, or in Nadia's case the ONLY match, they will call you regardless of your age and gender.
8. Is there any other way to help if you don't qualify as a candidate? What support do you guys need and what has been your biggest help to get you through all of this?
The best way that you can help is by encouraging someone who is in that demographic to join a registry.
As the worlds population gets more diverse, the more people we will need on the registry to match the needs of the population.
Not only are they doing stem cell transplants for people with cancers and blood diseases, but they are also looking into treating diseases with MS.
Science is pretty amazing.
9. How urgent is Nadia's situation?
Very urgent. She will die without this transplant and we are so lucky that we have partial cord blood match for her.
It is very urgent for MANY people, not just Nadia. I could list 100's of kids that are waiting for their match. It is heart breaking!
10. What resources are out there for parents who may be in your situation or going through something similar?
There are a lot of organizations out there. Here are a few that I have found helpful for information on BMT, and a link to an outreach group specifically for Nadia's disease.
It took me a few months to contact them as I didn't want to talk to anyone unless they had my daughter's matching marrow, but honestly once I did it was so great to reach out to other families. It made me feel like we weren't alone and everyone that I have been in contact with has had a wealth of information.
I encourage anyone who is going through a medical condition that is serious, to do a search on the Internet and see if they can find a support group. It has helped us tremendously.
- Dyskeratosis Congenita Outreach - http://www.dcoutreach.org/
Index.html - BC Cancer Agency - http://www.bccancer.bc.ca/HPI/
RecommendedLinks/treatment/ transplant.htm - Blood & Marrow Transplant Information Network - www.bmtinfonet.org
If anyone has any questions regarding this blog post please email me at mynellybellie@gmail.com
Follow my blog with Bloglovin
"Act as if what you do makes a difference. It does." ~ William James
No comments:
Post a Comment