Anthonys Angels & Associates Pt 2
Donation protected
(Please note that we have an amazing community that has raised almost $50,000 for this family. Due to a technical issue we are creating a "new" gofundme for this family for the reasons in the October 2020 update)
Meet Anthony; a 7 year old boy who has endured more than any adult human should ever have to.
Here is his story:
At 4 years old, Anthony was your typical kid. He never stopped moving, never sat down. He literally ran before he walked and his mom was constantly yelling at him to just sit down “for one minute!”. His zest for life is infectious, he is kind and fun and has the best smile. He makes friends super easily everywhere he goes.
At 4 and a half years old, based off a pure gut instinct, Anthony’s mom Pina forced his doctor to follow up on his lips being pale post a virus. It was a common side effect that she knew was lasting too long. Unfortunately her gut was right and after a series of testing they discovered that Anthony had Leukaemia. Pina often says that he got “the good kind” of Leukaemia, none of it is easy, but it was treatable, and for that they felt lucky.
Everyone was devastated, and yet, nothing ever stopped Anthony. He thrived through every phase of the protocol, surprising all of the doctors and nurses at every turn. He started Kindergarten full time halfway through the school year & never missed a day. Even on days where he spent the whole morning in the hospital he insisted that he didn’t want to miss gym class!
Anthony went through the next almost year like this; balancing his treatment with his home, and school life beautifully until October 2018. Towards the end of October Anthony developed a very high fever which lasted 5 days. On October 31st, Halloween (his favorite holiday) Anthony took what may very well be his last steps. After many tests his family got the diagnosis that Anthony had Acute Flaccid Myelitis; a devastating virus that attacked his spinal cord and left him paralyzed from the neck down.
Anthony spent 12 days in the ICU on BiPAP to help him breath as the virus attacked him everywhere. That boy who was always asked to just sit down for one minute could barely wiggle his fingers or toes.
After 2 months, many ups and downs, and way too many close calls, Anthony was “recovered” enough to not be in the hospital and was transferred to live in a rehab center. The only one in the city that can “help” him. It is on the opposite side of the city from where his family lives. He remains there 5 days a week doing intense therapy, and only goes home on the weekends. His mom lives there with him, swapping one day a week with his dad so that Anthony and his sister somehow manage to see both of their parents during the week. Anthony remains mostly paralyzed and in a wheelchair.
AFM is that virus you may have heard about, that “Polio Like Virus” that has so few cases that doctors are baffled by it. Each case attacks the patient differently and therefore there is no clear black and white protocol of what to do, what might work or not work, and if anything at all will work. There is no cure for AFM. There is only intense physiotherapy, and ongoing research. Some places are further along in their research than others.
Anthony’s parents have been all over every avenue to learn, to speak to doctors everywhere, to offer their son every opportunity that might help him regain some of his functions. In November Anthony underwent a surgery which consisted of a nerve transfer from his hands to his deltoids and triceps on both arms (he has no anti gravity movement).
The surgery was 10 hours long, but he came through it like the champ that he is and hopefully within the next 6-9 months we will see some success from it. His fingers and hands did get weakened by it but with intense therapy they are slowly coming back, however there is no guarantee.
Anthony’s parents have found an amazing surgeon based in the United States who has performed over 30 lower limb surgeries. The surgery is similar in concept; you take good working nerves and put them where he doesn’t have them anymore but should. She is an outside the box thinker, who is passionate about trying to help these kids affected by AFM. Canada is not performing these surgeries at this point. They were able to meet this doctor, and have her assess that Anthony qualifies for this surgery.
This is where they are at now. Anthony will have this surgery in March of this year, and given that the surgery needs to take place in the US Anthony’s family will not have any medical coverage there. The surgery alone will cost approximately $34,000 USD. They will need to travel with the whole family for at least one week, take their younger child out of school, leave their home, family and community and hope for the best.
We, Anthony’s Angels and Associates, are a group of moms whose kids have become Anthony’s close friends in his short time in elementary school, and as a result we moms have become close with each other.
Anthony’s family does not want to ask for help. They feel strongly that you do whatever you have to do for your kids. They are the strongest, most united crew, and we know that they will do whatever it takes to give their child every opportunity that exists for him- no matter what it costs them literally and figuratively. But after years of expenses & the high cost of the surgery and therapy with no coverage they are left with no alternative.
We insisted that we put this GoFundMe together for them. All we want as parents is to help our fellow parents, to do whatever we can to make the most difficult situation even just a tiny bit easier on them. We are so inspired by the strength and tenacity that we see in our friends Pina and David, in our son’s bff Anthony who literally never stops smiling…
Our hope is that we can come together as a community to help them get through this.
The surgery will cost them upwards of $34,000 USD, not accounting for undetermined fees for additional pre and post test, potential stay in the ICU post surgery etc... From there their goal is to have Anthony in intense therapy at the Kennedy Krieger institute in the United States which will likely cost $30,000+ . None of this can be covered by RAMQ. They have already spent over a year in rehab, travelled on over five occasions to research surgeries, met with surgeons etc. As well they pay $700+ weekly on therapies that either the rehab doesn’t offer or has cut out Anthony’s treatment protocol. All the while Anthony is still undergoing chemotherapy for his Leukaemia!
This family personifies all the amazing qualities we aim to teach our children to have, they don’t deserve the tough hand they have been dealt and they take it with stride. All we can think about is what if this was one of our children? How would we cope? How would we be able to afford to give our child what we know they need?
Please help us, help them reach this goal, so we can all have a hand in helping Anthony reach his full life’s potential.
*Note: The full costs of the treatments, therapies etc are not 100% known at this time. There are many variables at play; additional testing pre and post surgery, potential time spent in the ICU post surgery, length of time in rehab, etc. The goal was based on the best minimum guess we could make. Anthony’s family is very uncomfortable with the idea that they would get or ask for more than what they need. In the event that we manage to raise more than what they need, they plan to donate all additional funds to help further research into AFM, apparently 2020 is expected to be the worst year yet for this virus. (just another testament to how amazing this family is)*
Meet Anthony; a 7 year old boy who has endured more than any adult human should ever have to.
Here is his story:
At 4 years old, Anthony was your typical kid. He never stopped moving, never sat down. He literally ran before he walked and his mom was constantly yelling at him to just sit down “for one minute!”. His zest for life is infectious, he is kind and fun and has the best smile. He makes friends super easily everywhere he goes.
At 4 and a half years old, based off a pure gut instinct, Anthony’s mom Pina forced his doctor to follow up on his lips being pale post a virus. It was a common side effect that she knew was lasting too long. Unfortunately her gut was right and after a series of testing they discovered that Anthony had Leukaemia. Pina often says that he got “the good kind” of Leukaemia, none of it is easy, but it was treatable, and for that they felt lucky.
Everyone was devastated, and yet, nothing ever stopped Anthony. He thrived through every phase of the protocol, surprising all of the doctors and nurses at every turn. He started Kindergarten full time halfway through the school year & never missed a day. Even on days where he spent the whole morning in the hospital he insisted that he didn’t want to miss gym class!
Anthony went through the next almost year like this; balancing his treatment with his home, and school life beautifully until October 2018. Towards the end of October Anthony developed a very high fever which lasted 5 days. On October 31st, Halloween (his favorite holiday) Anthony took what may very well be his last steps. After many tests his family got the diagnosis that Anthony had Acute Flaccid Myelitis; a devastating virus that attacked his spinal cord and left him paralyzed from the neck down.
Anthony spent 12 days in the ICU on BiPAP to help him breath as the virus attacked him everywhere. That boy who was always asked to just sit down for one minute could barely wiggle his fingers or toes.
After 2 months, many ups and downs, and way too many close calls, Anthony was “recovered” enough to not be in the hospital and was transferred to live in a rehab center. The only one in the city that can “help” him. It is on the opposite side of the city from where his family lives. He remains there 5 days a week doing intense therapy, and only goes home on the weekends. His mom lives there with him, swapping one day a week with his dad so that Anthony and his sister somehow manage to see both of their parents during the week. Anthony remains mostly paralyzed and in a wheelchair.
AFM is that virus you may have heard about, that “Polio Like Virus” that has so few cases that doctors are baffled by it. Each case attacks the patient differently and therefore there is no clear black and white protocol of what to do, what might work or not work, and if anything at all will work. There is no cure for AFM. There is only intense physiotherapy, and ongoing research. Some places are further along in their research than others.
Anthony’s parents have been all over every avenue to learn, to speak to doctors everywhere, to offer their son every opportunity that might help him regain some of his functions. In November Anthony underwent a surgery which consisted of a nerve transfer from his hands to his deltoids and triceps on both arms (he has no anti gravity movement).
The surgery was 10 hours long, but he came through it like the champ that he is and hopefully within the next 6-9 months we will see some success from it. His fingers and hands did get weakened by it but with intense therapy they are slowly coming back, however there is no guarantee.
Anthony’s parents have found an amazing surgeon based in the United States who has performed over 30 lower limb surgeries. The surgery is similar in concept; you take good working nerves and put them where he doesn’t have them anymore but should. She is an outside the box thinker, who is passionate about trying to help these kids affected by AFM. Canada is not performing these surgeries at this point. They were able to meet this doctor, and have her assess that Anthony qualifies for this surgery.
This is where they are at now. Anthony will have this surgery in March of this year, and given that the surgery needs to take place in the US Anthony’s family will not have any medical coverage there. The surgery alone will cost approximately $34,000 USD. They will need to travel with the whole family for at least one week, take their younger child out of school, leave their home, family and community and hope for the best.
We, Anthony’s Angels and Associates, are a group of moms whose kids have become Anthony’s close friends in his short time in elementary school, and as a result we moms have become close with each other.
Anthony’s family does not want to ask for help. They feel strongly that you do whatever you have to do for your kids. They are the strongest, most united crew, and we know that they will do whatever it takes to give their child every opportunity that exists for him- no matter what it costs them literally and figuratively. But after years of expenses & the high cost of the surgery and therapy with no coverage they are left with no alternative.
We insisted that we put this GoFundMe together for them. All we want as parents is to help our fellow parents, to do whatever we can to make the most difficult situation even just a tiny bit easier on them. We are so inspired by the strength and tenacity that we see in our friends Pina and David, in our son’s bff Anthony who literally never stops smiling…
Our hope is that we can come together as a community to help them get through this.
The surgery will cost them upwards of $34,000 USD, not accounting for undetermined fees for additional pre and post test, potential stay in the ICU post surgery etc... From there their goal is to have Anthony in intense therapy at the Kennedy Krieger institute in the United States which will likely cost $30,000+ . None of this can be covered by RAMQ. They have already spent over a year in rehab, travelled on over five occasions to research surgeries, met with surgeons etc. As well they pay $700+ weekly on therapies that either the rehab doesn’t offer or has cut out Anthony’s treatment protocol. All the while Anthony is still undergoing chemotherapy for his Leukaemia!
This family personifies all the amazing qualities we aim to teach our children to have, they don’t deserve the tough hand they have been dealt and they take it with stride. All we can think about is what if this was one of our children? How would we cope? How would we be able to afford to give our child what we know they need?
Please help us, help them reach this goal, so we can all have a hand in helping Anthony reach his full life’s potential.
*Note: The full costs of the treatments, therapies etc are not 100% known at this time. There are many variables at play; additional testing pre and post surgery, potential time spent in the ICU post surgery, length of time in rehab, etc. The goal was based on the best minimum guess we could make. Anthony’s family is very uncomfortable with the idea that they would get or ask for more than what they need. In the event that we manage to raise more than what they need, they plan to donate all additional funds to help further research into AFM, apparently 2020 is expected to be the worst year yet for this virus. (just another testament to how amazing this family is)*
Organizer and beneficiary
Jessica Aflalo Rubin
Organizer
Côte Saint-Luc, QC
David Sheinart
Beneficiary