DONATE to the Isabelle Sherman Family Research Fund

The Isabelle Sherman Family Research Fund

Izzy_5Isabelle “Izzy” Sherman was born on April 16, 2012. Her life here on Earth was much too short. She grew her angel wings on March 6, 2013, after a hard-fought battle with a rare mitochondrial disease – Mitochondrial Complex 1 Deficiency. As with all mitochondrial diseases, there is no cure for Complex I Deficiency.

In her short 10-month life, Izzy touched and inspired thousands. For over six months her medical issues were a mystery, filled with more questions than answers. During those long six months, Isabelle underwent so many tests at Albany Medical Center: spinal taps, muscle tissue samples, IVs, CT scans, MRIs, and the list goes on and on. Izzy had been through more than most people will ever have to be subjected to and yet she found the inner strength to smile through it all. She had battled sepsis countless times and respiratory failure was something that was always waiting around the next corner.

Izzy_4Izzy could not eat food like a normal infant because she was unable to swallow. Because of that, Izzy had to have a central line placed to constantly provide her with TPN (total parental nutrition) and a special high calorie formula. Along with the central line, she had to have an M-key button surgically inserted into her stomach because she could not burp or throw up. The M-key button allowed Izzy’s mommy to release the gasses that got trapped in her tiny tummy.

Izzy was continually medicated with antibiotics to try and keep the fungus from breaking through and overtaking her tiny body. Eventually the doctors decided to stop the antibiotics because the fungus had broken through those defenses. She was also on a morphine drip to keep her comfortable. Mitochondrial diseases rob the body of nutrition. They cause the organs to fail and cause discomfort and pain. Because of that, the family made sure that Izzy would not feel the effects of the disease. They kept her comfortable and surrounded by love. They made the most of every moment, fitting in snuggles whenever they could.

Even with the short version of all this baby girl has been through, it is astounding to think of how she was able to be so joyful. She was a light in this dark world, and she inspired so many people to live better lives by loving their families harder. Updates on Izzy were posted to her Facebook page (http://www.facebook.com/HelpIsabelleGrow), where over 60,000 people lovingly referred to as “Team Izzy” waited with bated breath for a picture or news of her progress. She was loved by complete strangers residing in more than 15 countries, and she had the ability to affect thousands.

Izzy_2Isabelle was the beautiful daughter of Kenny and Stephanie Sherman. She has three big brothers: Daymeon, Caydan, and Jr. Her family needs prayers and support during this difficult time. Thank you for supporting Team Izzy!

 

The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The UMDF provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded nearly $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.

Grants have supported research for one to three years at institutions across the United States, Canada, Europe, and Australia. Recently, projects have included studying what mechanisms in abnormal mitochondria cause muscle dysfunction, enzyme replacement therapy and other potential treatments, as well as developing models for specific mitochondrial disorders.

Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.

Izzy_1Through research, the medical world will one day have the resources to help children like Isabelle. Until then, please help her family and the UMDF “redefine hope” for everyone affected by mitochondrial disease through a donation to the Isabelle Sherman Research Fund

DONATE to the Isabelle Sherman Family Research Fund