Ellery McNamara’s Brave Battle Against OMS
Donation protected
Just after Christmas, my 2 year old niece Ellery - who loves Minnie Mouse, Elsa and Anna, dogs, horses, and her cousins - was diagnosed with an extremely rare autoimmune disease that is attacking her brain and robbing her of her abilities to speak, eat, walk, control her arms, and play. Ellery’s diagnosis confirms for us that she is truly one in a million, since that’s how unlikely it is for a child to get Opsoclonus Myoclonus Syndrome. It is heartbreaking to see our beautiful Ellery struggle to eat, communicate, move, and play - all things she did with joy and ease until just before Christmas - and to see my brother, Brad, and sister-in-law, Maura, work so hard to get her the best care possible.
In early December, Brad and Maura noticed that their adorable little munchkin was unsteady on her feet, bumping into things, had shaky hands, and was extremely agitated. At Boston Children’s Hospital, Ellery endured painful and scary tests, including a brain MRI, a lumbar puncture and lots of blood work. Doctors thought she had a virus and assured her worried parents that the symptoms should go away on their own soon. Instead, her symptoms got much worse and by Christmas, Ellery was unable to walk, stand, feed herself or speak clearly. The next day, Brad and Maura noticed that Ellery’s eyes were making unusually rapid movements and fluttering, which was one of the warning signs doctors had told them to look out for. They rushed back to Boston Children’s Hospital where Ellery had another set of tests, including a full body MRI. Doctors delivered the shocking news that Ellery’s scary neurological symptoms were the result of OMS - an extremely rare autoimmune disease that she will battle for the rest of her life.
We don’t know why Ellery got OMS. In 50% of patients, OMS appears when the body is trying to fight off a cancerous tumor, called a neuroblastoma, but starts attacking the brain instead. None of Ellery’s tests detected a tumor or cancer, so she may be part of the other 50%, and we may never know what sparked her immune system to start damaging her brain. OMS causes loss of muscle control, chaotic eye movements, involuntary tremors, and fits of rage that for most patients are lifelong. In the UK, OMS is often referred to as Dancing Eyes-Dancing Feet Syndrome because of the muscle jerks and eye movements the disease causes.
Amidst their terror and sleep deprivation, Brad and Maura rung in 2019 at Boston Children’s Hospital, where they spent 10 days encouraging and loving Ellery through more tests, procedures and treatments. Ellery is undergoing a very aggressive treatment regimen to try to stop the attack on her brain and recondition her immune system. Every 4 weeks for the next few years, they will return to Boston Children’s Hospital for several days so Ellery can receive infusions of high doses of steroids, Rituximab (an antibody therapy medicine), and IVIG (Intravenous Immunoglobulin).
In between infusion treatments, Ellery will go home and work with neurologists, physical therapists, occupational therapists and speech therapists to try to regain the motor and speech skills that OMS is stealing from her. So far, her determination and persistence have impressed her family and her health care providers. Despite her frustrating lack of control over her muscles, she does not give up, whether she’s trying to stack legos during OT or feed herself with a spoon. It is inspiring to see her work so hard!
At this point, Ellery is not well enough to attend her beloved school, Transportation Children's Center. She misses her teachers and friends and talks about them all the time! In the short-term, Brad and Maura are relying on family and temporary nanny help so that they can continue to work at their full time jobs. As many of you already know, Brad is a small business owner and Maura works for Joslin Diabetes Center.
Because OMS is so rare, no one can tell us exactly what Ellery’s future holds. But, we do know some things:
- We know that Ellery is a fierce fighter who is battling OMS with every ounce of her strength.
- We know that her parents are fierce protectors, determined to give her the best chance at having the highest quality of life possible.
- We know that Ellery is a fiercely cherished little girl - the many thoughts, prayers, well wishes, meals, cards, calls, and texts Brad and Maura have received are proof of that.
Many people are asking how they can help. To those of you who have reached out and helped in some way already, Brad and Maura are really grateful. Thank you so much! If you would like to make a donation of any amount, your support will be tremendously appreciated. It will fill them with love and help them with:
- current and future hospital and doctors’ bills.
- medicine and treatments.
- outpatient therapies.
- living expenses while at least one of them takes time off work.
- specialized child care.
- Ellery's future care.
-research to help find a cure for Ellery and the other one in a million kids like her.
Brad and Maura feel tremendously grateful for the supportive care team they are working with at Boston Children's Hospital. There are very few doctors in the world who are familiar with OMS. Ellery is fortunate to live near such an amazing hospital with doctors who have experience treating and researching this very rare disease. To contribute to this body of research and hopefully provide insight into the disease, Brad and Maura have enrolled Ellery into studies being conducted at Boston Children’s Hospital.
Anyone who knows Brad and Maura knows that they don’t ask for help lightly. But, OMS is too big and strong for any one family to fight on their own. They greatly appreciate your support of them and Ellery during this really hard time, while they do everything possible to support her recovery. On behalf of them I THANK YOU for your concern, your support, and your love.
Erin Fortunato (Brad’s sister)
If you would like to learn more about Opsoclonus Myoclonus Syndrome, a disease that none of us had ever heard of before, here are a couple good resources:
https://omslifefoundation.org/
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
In early December, Brad and Maura noticed that their adorable little munchkin was unsteady on her feet, bumping into things, had shaky hands, and was extremely agitated. At Boston Children’s Hospital, Ellery endured painful and scary tests, including a brain MRI, a lumbar puncture and lots of blood work. Doctors thought she had a virus and assured her worried parents that the symptoms should go away on their own soon. Instead, her symptoms got much worse and by Christmas, Ellery was unable to walk, stand, feed herself or speak clearly. The next day, Brad and Maura noticed that Ellery’s eyes were making unusually rapid movements and fluttering, which was one of the warning signs doctors had told them to look out for. They rushed back to Boston Children’s Hospital where Ellery had another set of tests, including a full body MRI. Doctors delivered the shocking news that Ellery’s scary neurological symptoms were the result of OMS - an extremely rare autoimmune disease that she will battle for the rest of her life.
We don’t know why Ellery got OMS. In 50% of patients, OMS appears when the body is trying to fight off a cancerous tumor, called a neuroblastoma, but starts attacking the brain instead. None of Ellery’s tests detected a tumor or cancer, so she may be part of the other 50%, and we may never know what sparked her immune system to start damaging her brain. OMS causes loss of muscle control, chaotic eye movements, involuntary tremors, and fits of rage that for most patients are lifelong. In the UK, OMS is often referred to as Dancing Eyes-Dancing Feet Syndrome because of the muscle jerks and eye movements the disease causes.
Amidst their terror and sleep deprivation, Brad and Maura rung in 2019 at Boston Children’s Hospital, where they spent 10 days encouraging and loving Ellery through more tests, procedures and treatments. Ellery is undergoing a very aggressive treatment regimen to try to stop the attack on her brain and recondition her immune system. Every 4 weeks for the next few years, they will return to Boston Children’s Hospital for several days so Ellery can receive infusions of high doses of steroids, Rituximab (an antibody therapy medicine), and IVIG (Intravenous Immunoglobulin).
In between infusion treatments, Ellery will go home and work with neurologists, physical therapists, occupational therapists and speech therapists to try to regain the motor and speech skills that OMS is stealing from her. So far, her determination and persistence have impressed her family and her health care providers. Despite her frustrating lack of control over her muscles, she does not give up, whether she’s trying to stack legos during OT or feed herself with a spoon. It is inspiring to see her work so hard!
At this point, Ellery is not well enough to attend her beloved school, Transportation Children's Center. She misses her teachers and friends and talks about them all the time! In the short-term, Brad and Maura are relying on family and temporary nanny help so that they can continue to work at their full time jobs. As many of you already know, Brad is a small business owner and Maura works for Joslin Diabetes Center.
Because OMS is so rare, no one can tell us exactly what Ellery’s future holds. But, we do know some things:
- We know that Ellery is a fierce fighter who is battling OMS with every ounce of her strength.
- We know that her parents are fierce protectors, determined to give her the best chance at having the highest quality of life possible.
- We know that Ellery is a fiercely cherished little girl - the many thoughts, prayers, well wishes, meals, cards, calls, and texts Brad and Maura have received are proof of that.
Many people are asking how they can help. To those of you who have reached out and helped in some way already, Brad and Maura are really grateful. Thank you so much! If you would like to make a donation of any amount, your support will be tremendously appreciated. It will fill them with love and help them with:
- current and future hospital and doctors’ bills.
- medicine and treatments.
- outpatient therapies.
- living expenses while at least one of them takes time off work.
- specialized child care.
- Ellery's future care.
-research to help find a cure for Ellery and the other one in a million kids like her.
Brad and Maura feel tremendously grateful for the supportive care team they are working with at Boston Children's Hospital. There are very few doctors in the world who are familiar with OMS. Ellery is fortunate to live near such an amazing hospital with doctors who have experience treating and researching this very rare disease. To contribute to this body of research and hopefully provide insight into the disease, Brad and Maura have enrolled Ellery into studies being conducted at Boston Children’s Hospital.
Anyone who knows Brad and Maura knows that they don’t ask for help lightly. But, OMS is too big and strong for any one family to fight on their own. They greatly appreciate your support of them and Ellery during this really hard time, while they do everything possible to support her recovery. On behalf of them I THANK YOU for your concern, your support, and your love.
Erin Fortunato (Brad’s sister)
If you would like to learn more about Opsoclonus Myoclonus Syndrome, a disease that none of us had ever heard of before, here are a couple good resources:
https://omslifefoundation.org/
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
Organizer and beneficiary
Erin McNamara Fortunato
Organizer
Blairstown, NJ
Maura McNamara
Beneficiary