Written by Sasha Ferrandi (Olivia’s dad):
Olivia Ferrandi
Olivia Susan Ferrandi was born on October 20, 2008. At the age of six months, our pediatrician noticed that her poor head control warranted some follow-up tests with a neurologist. After numerous tests (blood work, urine samples, and MRI’s,) Olivia was diagnosed with a rare and fatal genetic disorder known as Canavan Disease. It is typically a Jewish disease and the fact that I am only 1/2 Jewish and Jamie has no Jewish heritage makes our case extremely rare.
We were told that basically we had no hope. Most children with Canavan cannot crawl, walk, sit or talk. Over time they may suffer seizures, become paralyzed, mentally retarded or blind and have trouble swallowing. Although hearing usually remains a functioning sense, deafness may also result. The typical lifespan of children with the disease is 4-10 years….
Needless to say Jamie and I, as well as our family and friends, were so floored by the news that it paralyzed us. As soon as we knew what Olivia was facing, we immediately set out to find the best care possible.
Although this is such a rare disease, we learned through research, and more importantly, Jacob’s Cure, that there are treatments available to potentially help improve Olivia’s quality of life and prolong her lifespan. Jordana, Jacob’s mother, was so helpful and caring towards our family and provided us with a ton of information about the disease and where to go for help. There is a team of doctors (the only ones in the United States) in New Jersey, New York and Pennsylvania who specialize in treating the disease. We immediately contacted these individuals and were on a plane in June to visit them.
The Ferrandi Family with Canavan disease researcher, Dr. Paola Leone
We were so happy and joyous to hear that these doctors and specialists, after numerous tests and personal visits with Olivia, labeled her case as “atypical” for Canavan. They told us they had never seen a case like Olivia’s – she was able to roll over, smile and laugh and was very alert… Although her case is atypical, there is a long road ahead. Olivia is on a strict and diligent schedule. She takes over 8 pills/vitamins per day (as recommended by Dr. Paola Leone) and has physical, occupational and speech therapy every week. She has also done aqua therapy as well…
We love Olivia so much for who she is and know that she has a wonderful life ahead of her.
{ 2 comments… read them below or add one }
With faith and hard work all thiungs are possible. We, as the grandparents of Olivia, were shattered by the news that she had Canavans. When you first feel the pain of this knowledge it is overwhelming and your total rationality and ability to think and function as you did, falls by the wayside. However, knowing always that KNOWLEDGE IS POWER, we grasped the demon Canavan by its ugly head and learned that we can and will fight untill we find a cure for Olivia and all the children afflicted with this horrible disease. Though we are a small group, we are a powerful one, we have brave scientists like Paula Leone and her group, and brave mothers like Jacobs Mom , Jordana and many others who give us inspiration each day to keep fighting the demon. Most of all we have Olivia and Jacob and all these incredible children who we can NEVER let down. We will win by our sheer determination and the donations from all the many people and hopefully organizations who care about the future of our world-our children.
Thank you for your story about Olivia and her Atypical Canavan story. Our son Liam is awesome! I am of Eastern European Jewish decent, my husband is not Jewish so we too feel the odds of him having Canavan’s was small. He was diagnosed with Canavan Disease at 9 months old. He is now 13 mos. and is doing great! We have not been told he has an atypical case, but based on his progress we believe he is already beating the odds. Liam had one special MRI at Children’s Hospital of Philidelphia and is due for another in early October. He is on 7 different drugs which seem to be working beautifully. I am so curious to hear the progress in his myelin growth and to share his physical progress with Dr. Leone. He has found his belly laugh, is able to put all his weight on his legs with some support, is trying to crawl and is showing and amazing strength each day in efforts to lift his head. He is able to lift it by himself some of the time and lights up at our excitement! I would love to continue to hear positive stories about Olivia’s progress. I feel it will be a major light for our fight. We too are fighters! We are in this journey with Liam and WILL NOT let Canavan’s win! Thanks for sharing and all the best to you, Olivia and your entire family.
Amy Heller…Liam (Fischer’s) proud Mom
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