A diagnosis that changed their lives – for the better
One year ago today, we received a phone call that changed everything for the best. After years of anguish: a diagnosis.
Both of our children were admitted to the Montreal Children’s Hospital after eight days of life, after losing too much weight. Gabi spent almost a year as an in-patient, trying to gain weight. Benji never got as sick, because we knew what worked for Gabi and acted quickly. They both had low protein, low vitamins, low iron and anemia. We juggled, we balanced, we struggled, but we made it work. They had every test in the book, more than once, but no answers.
One year ago, a geneticist in California found the problem. They both have an extremely rare mutation in an enzyme that absorbs fat. So rare that there are only five known cases in the world and two live in my house. The treatment: a low fat diet! With less fat irritating the intestines, everything else gets absorbed. Since then, everything has changed. All their blood levels have improved and we have been able to cut medications and supplements. Gabi feels better in general, is more outgoing, happy and eats by mouth! Benji eats like a champ and weighs in the 50th percentile!
Gabi and Benji share all the same doctors. Our true hero is Dr. Veronique Morinville in the Division of Gastroenterology and Nutrition; without her this never would have happened. Gabi and Benji are also currently being followed by Geraldine Shaack and Dr. Hema Patel in the Complex Care Service (along with the whole Complex Care team). Also Marie-Josee Trempe, our nutritionist, is invaluable. To all of you, thank you so very much!
- Robert Bloom
Last May, the Bloom family shared their incredible story on the Caring for Kids Radiothon, and helped us raise $ 1,460,000 for the Children’s. If you have a story you’d like to share on the Radiothon, let us know – we’d love to hear it! Send an email to sdef@mchf.com with your name, your child’s name, and the details of your story.
Gabi and Benji share all the same doctors. Our true hero is Dr. Veronique Morinville in the Division of Gastroenterology and Nutrition; without her this never would have happened. Gabi and Benji are also currently being followed by Geraldine Shaack and Dr. Hema Patel in the Complex Care Service (along with the whole Complex Care team). Also Marie-Josee Trempe, our nutritionist, is invaluable. To all of you, thank you so very much!
- Robert Bloom
Last May, the Bloom family shared their incredible story on the Caring for Kids Radiothon, and helped us raise $ 1,460,000 for the Children’s. If you have a story you’d like to share on the Radiothon, let us know – we’d love to hear it! Send an email to sdef@mchf.com with your name, your child’s name, and the details of your story.