Help Support Our Strong Hero Avery Fight OMS
Donation protected
In the last couple of months, there has been a lot of uncertainty, sadness, pain, anger, and questioning of why. With this, there has also more importantly been an overwhelming amount of support, strength, and thoughtfulness. We have seen 3 people who we love and cherish have to undergo something so unimaginable, so hard and so unfair. The strength and courage that they have shown, especially our sweet, beautiful Avery (who took surgery like a champ) who is 18 months and turns 2 on May 10, has been an absolute inspiration.
I know there have been some updates shared but wanted to let everyone know some background:
2 months ago, Avery left Lutheran General after a three day hospital stay with a diagnosis of Acute Cerebellar Ataxia where this beautiful, sweet, independent girl stopped walking, talking, started shaking and had fast eye movements. Avery started physical therapy but nothing seemed to be working....
On Monday night, 11/19, Michael and Helena's parental instincts kicked in and they brought Avery to Lurie’s ER and was admitted right away. Here, we all hoped to find answers and we did. We learned that Avery has been diagnosed with Opsoclonus-Myoclonus Syndrome, an extremely rare neurological disorder (1 in 10 million) that is associated with ocular, motor, behavioral, sleep and language disturbances, which was a brutal diagnosis. Avery underwent a CT scan to rule out any tumors, but unfortunately one was found on her adrenal gland. On Wednesday, 11/23, Avery had to have surgery to remove her entire adrenal gland just to be safe since the tumor was attached.
Avery spent 3 nights in Luries where they found a neuroblastoma tumor that is often involved in cases like this. They performed surgery to take it out and will perform additional tests to make sure the cancer did not spread to her nervous system. Avery was absolute rockstar for the removal as well as the bone marrow tests. Avery’s parents decided to donate some of her bone marrow to researchers since her diagnosis is so rare and hope it will help get answers for her and others. As we learn more about OMS and how there are only thousands who have it in the whole world, we are especially thankful Lurie’s caught it when they did and for being truly amazing.
Avery will start an aggressive treatment plan that includes IVIG Immunoglobulin therapy as well as high dose steroid shots, physical therapy, occupational therapy and speech therapy. She will likely start on the drug rituximab. She will have some hospital nights and some nights she can come home. She will have countless scans to make sure no cancer spread to her nervous system and to check in on her insides. Her parents will try to get her to the best specialist in the country since it’s all so rare too.
For those of you who have asked what you can do to help, THANK YOU!! Your prayers, thoughts, well wishes, meals, cards, calls, and texts have been so appreciated. If you would like to make a donation, your support will help with current and pending hospital bills, coupled with future doctor visits, overnight stays, medicine and treatment, visits to OMS specialists, taking days off work & current/future research to help find a cure. I am hopeful that we can count on the support of friends, family, neighbors, coworkers, & everyone to help if you can and please, please keep Avery, Helena, and Michael in your thoughts and prayers!
Thank you again for your support for the Smiths. If you’re interested in learning more about Opsoclonus Myoclonus, here are a couple good resources:
OMS Life Foundation
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
Here are some pics of our sweet girl Avery Mary Smith: 18 months young and turns 2 on May 10!
I know there have been some updates shared but wanted to let everyone know some background:
2 months ago, Avery left Lutheran General after a three day hospital stay with a diagnosis of Acute Cerebellar Ataxia where this beautiful, sweet, independent girl stopped walking, talking, started shaking and had fast eye movements. Avery started physical therapy but nothing seemed to be working....
On Monday night, 11/19, Michael and Helena's parental instincts kicked in and they brought Avery to Lurie’s ER and was admitted right away. Here, we all hoped to find answers and we did. We learned that Avery has been diagnosed with Opsoclonus-Myoclonus Syndrome, an extremely rare neurological disorder (1 in 10 million) that is associated with ocular, motor, behavioral, sleep and language disturbances, which was a brutal diagnosis. Avery underwent a CT scan to rule out any tumors, but unfortunately one was found on her adrenal gland. On Wednesday, 11/23, Avery had to have surgery to remove her entire adrenal gland just to be safe since the tumor was attached.
Avery spent 3 nights in Luries where they found a neuroblastoma tumor that is often involved in cases like this. They performed surgery to take it out and will perform additional tests to make sure the cancer did not spread to her nervous system. Avery was absolute rockstar for the removal as well as the bone marrow tests. Avery’s parents decided to donate some of her bone marrow to researchers since her diagnosis is so rare and hope it will help get answers for her and others. As we learn more about OMS and how there are only thousands who have it in the whole world, we are especially thankful Lurie’s caught it when they did and for being truly amazing.
Avery will start an aggressive treatment plan that includes IVIG Immunoglobulin therapy as well as high dose steroid shots, physical therapy, occupational therapy and speech therapy. She will likely start on the drug rituximab. She will have some hospital nights and some nights she can come home. She will have countless scans to make sure no cancer spread to her nervous system and to check in on her insides. Her parents will try to get her to the best specialist in the country since it’s all so rare too.
For those of you who have asked what you can do to help, THANK YOU!! Your prayers, thoughts, well wishes, meals, cards, calls, and texts have been so appreciated. If you would like to make a donation, your support will help with current and pending hospital bills, coupled with future doctor visits, overnight stays, medicine and treatment, visits to OMS specialists, taking days off work & current/future research to help find a cure. I am hopeful that we can count on the support of friends, family, neighbors, coworkers, & everyone to help if you can and please, please keep Avery, Helena, and Michael in your thoughts and prayers!
Thank you again for your support for the Smiths. If you’re interested in learning more about Opsoclonus Myoclonus, here are a couple good resources:
OMS Life Foundation
https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
https://www.aao.org/pediatric-center-detail/neuro-ophthalmology-opsoclonus-myoclonus-syndrome
Here are some pics of our sweet girl Avery Mary Smith: 18 months young and turns 2 on May 10!
Fundraising team: Team AMS Beats OMS (9)
John Hamilton Smith
Organizer
Park Ridge, IL
Helena Smith
Beneficiary
Courtney Moran
Team member
Danielle D
Team member
Mary Downing-smith
Team member
Mary Hernandez
Team member
