A Young Boy’s Journey with Primary Immunodeficiency

Juilan's journey with Primary Immunodeficiency began when he was 18 months old. Read his inspiring story.

julian-primary-immunodeficiency

My name is Julian Ferrante and I am 10 years old.

When I was 18 months old, I was diagnosed with a rare Immune condition, CGD ( Chronic Gramulomatous Disease) A genetic condition that affects the immune system cells—making them function improperly. I was admitted to Sick Children’s Hospital on March 21st, 2008 for 3 weeks to conduct a multitude of tests and then I was sent home. I was home for only about one and a half weeks before being re-admitted on May 1st (due to fever) for two months.

For the two months that I was there, I had so many tests and lots of blood work done. The Doctors and staff were trying to figure out the cause of all my fevers and symptoms and still with all the tests, everything kept coming back negative and no source as the cause of my fevers was found.

However, they did manage to keep it under control. After trying many different types of antibiotics, Meropenem was the one to help control the fevers, and on July 6th, I was able to go home.

At home, I had to have Home Care Nurses come every day to give me my medications through an IV. After a few visits from the nurses, my Mom basically earned a degree in Nursing; she did doing everything she was taught, from flushing the IV line, to administering medication every 2 hours from morning to night and more to make me become stronger and healthier day by day. Watching my Mom every day taking such good care of me has given me so much courage and strength and has made me that much stronger.

After a tense two hour meeting that my parents attended with the Board of Doctors, it was then decided that I would be set up for a Bone Marrow Transplant to cure me and make me well again.

Being home was a nice change of scenery from the hospital and being surrounded with family and friends was very up lifting . I know I was only going to be home for a little while before having to be re-admitted again for the Bone Marrow Transplant. My then 7 year old sister Alyssa would be the one giving me her Bone Marrow as she was a complete match for me.
This was a lucky break for me and my family as there was a smaller chance of having complications with a sibling donor than with an “outside” donor from the donor list.

On August 24th, 2008 (my Birthday) I had a small birthday celebration with my mom, dad, sister and brother which had to be cut short as I was to be admitted at Sick Children’s Hospital to get prepped for the Bone Marrow Transplant which was scheduled for September 5th, 2008.

After a successful transplant, I had a fully independent functioning immune system but we were still faced with a few minor bumps along the road…

In 2011, I got the measles, even after being vaccinated.

I was diagnosed with Bronchiolitis Obliterans, which is a non reversible obstructive lung disease.

In 2012, I was diagnosed with Plasmacytoma in the tongue (a rare form of Cancer) but after further tests at Princess Margaret Hospital it was found to be negative.

I had a minor case of Graph vs. Host Disease, a condition that occurs after transplant, where the donated bone marrow views the recipient’s body as foreign and the donated cells/ bone marrow attack the body.

I also had a minor skin condition known as Lichen Sclerosus, a common skin disorder which was treated with a steroid cream, as well as narrowly avoided having Ulcerative Colitis (an inflammatory bowel disease).

Today, I can happily say that by the grace of God, the love, strength and tremendous support of my family and friends,the amazing and wonderful team of Doctors, Nurses,and the Immunology staff members at Sick Children’s Hospital, I am 8 years post BMT ( bone marrow transplant) and a very happy, healthy and strong young man!

My family and I are always looking for ways to give back to those who have helped us with this trying time.

We have a fund set up with Immunodeficiency Canada under the heading  “Julian’s Journey” to which donations can be made to help other children and their families battling the same illness.

We also have an annual Charity Dinner Dance Gala hosted by Ciao Bella Dance Studio, which regularly donate proceeds to Immunodeficiency Canada.

We also have garage sales and attend many vendor shows and use the profits to give back to Sick Kids as well as donate toys to the hospital at Christmas time.

You can visit my web page to learn more about my story and upcoming events at www.juliansjourney.ca.

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