Diamond Blackfan
Anemia Canada

67 Young Court

Orangeville, Ontario 

Canada L9W 0A8

 

Telephone: 416-802-8109

email: janet@dbacanada.com

@2016 by Diamond Blackfan Anemia Canada

Website by CWD

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Our Diamonds

Our “Diamond’s” Story

This Is JACK 

 

At just 12 weeks of age, our  son Jack was rushed to the ER with a critically low haemoglobin of 22. At that time we had no idea what a haemoglobin was or  what that meant. We later found out that a normal hgb range was 110 - 140 and that every organ in his body was beginning to shut down.  We were dangerously close to losing him. This was when Jack received his first ever blood transfusion. Within a few months he was diagnosed with Diamond Blackfan anaemia at the hospital for Sick Kids in Toronto. Our life was literally turned upside down. Our normal life became doctors visits, hospital visits,  blood transfusions, finger pokes, MRIs,  x-rays, ultrasounds, bone marrow biopsy's and more. After one year of this, Jack was put on a steroid trial to see if it could kick start his bone marrow, but unfortunately for us it did not work. The next step was to check our three other children to see if they were a bone marrow match so we could explore the option of a transplant,  yet again another let down. We felt as if there was no help. Jack would continue to need blood transfusion and nightly chelation therapy for the rest of his life unless a cure was found. 

We had always wanted another baby, but we did not want to take the chance of having another child with DBA and we wanted an HLA match for Jack, so we began exploring IVF and PGD. After almost 2 years of meetings,  needles, blood tests,  medication, injections, etc we were finally ready to begin the final steps towards having another baby.  With the odds stacked against us we were looking at a 99.7% chance that this would NOT work for us. After so much time, energy, and money,  it was likely that our dream of having another baby would not come true. 

As we stepped into Dr. Virro's office and sat down in those big comfy chairs I will forever remember the words he said to us  "Do you feel like you've won the lottery? Well if you don't you should because you have one healthy matching embryo.” Thank you God for blessing us with this, we now had one final step in the process: implantation. Although we had thus far beating all the odd there was a significantly high risk of the "procedure" not working but I always say the Lord works in mysterious ways and miracles are all around us. We just needed to take the time  to look. On March 19, 2015 at 9:52 PM we welcomed our beautiful little miracle Ben Emmanuel into the world. A healthy, DBA free. 8 pound baby boy.   The missing link to complete our family of five beautiful children. 

 

Although we have stored the cord blood from Ben to potentially use one day in transplant,  there are no plans right now for a transplant for our son Jack, as we are holding out for better treatment and potentially a safer cure for DBA patients.  Transplant is not a simple process and does not come without extremely high risks to the child, a risk at this point that we are not willing to take. 

Share your story, trials and triumphs with us as every 3 months we would like to add a “diamond's” story.