Jack Pereira’s Story
When my 12-week-old son Jack was rushed to emergency with critically low haemoglobin, I had no idea what haemoglobin was. I later found out that a normal range is 110-140 grams per litre of blood. At Jack’s level of 22, every organ in his body was beginning to shut down and we were dangerously close to losing him. This was when Jack received his first ever blood transfusion. Within months he was diagnosed with DBA at a hospital for sick kids in Toronto, Ontario.
Our lives were turned upside-down. Normal life became doctor and hospital visits, blood transfusions, finger pokes, MRIs, x-rays, ultrasounds and bone marrow biopsies. After one year of this Jack was put on a steroid trial to see if it could kick-start his bone marrow. Unfortunately, this did not work. The next step was to check our three other children to see if their bone marrow could be a match for a transplant. After another let down we felt as if there was no hope. Unless a cure was found, Jack would continue to need blood transfusions and nightly chelation therapy for the rest of his life.
We had always wanted another baby, and though we did not want to take the chance of having another child with DBA we wanted a human leukocyte antigen (HLA) match for Jack. Unbeknownst to us, this would become an incredibly long journey. We began exploring in vitro fertilisation (IVF) and pre-implantation genetic diagnosis (PGD). Several disappointing visits with numerous IVF doctors followed. Then we were introduced to Dr Michael Virro in Markham, Ontario. You could call it a coincidence, but I don’t believe anything in life is a coincidence. This chance meeting turned out to be the answer to our prayers.
After almost two years of meetings, needles, blood tests and medications we were blessed to discover I had 18 potential embryos. After losing some during the extraction, freezing and growing processes, we ended up with six. Due to my age, 75% of these would likely not be healthy, and of the 1.5 embryos left, there was only a 25% chance of a HLA match for our son. We were looking at basically 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.
I will forever remember the day I was sitting in a big comfy chair in Dr Virro’s office and he said: ‘Do you feel like you’ve won the lottery? Well, if you don’t you should, because you have one healthy matching embryo.’ We thanked God for blessing us with this, but we still had to go through the implant process and associated risks of the procedure not working.
On 19 March 2015 at 9:52 PM we welcomed our beautiful little miracle Ben Emmanuel into the world. A healthy DBA-free eight-pound baby boy – the missing link to complete our family of five beautiful children.
Now we have stored cord blood from Ben to potentially use one day in a transplant for Jack. Because of the extremely high transplant risks – risks that at this point we are not willing to take – for now we are holding out for better treatments and a safer cure for DBA patients. For us, living with chelation every day and transfusions every three weeks is not scary. What scare us most are the unknowns and the unmentionables that Jack could face in his lifetime. By supporting Captain Courageous we hope we can raise the much-needed funds to help find a cure for this life-threatening blood disorder.