Mighty Max
Donation protected
It is with a heavy heart that we announce the passing of our beautiful son, Maximilian. He grew his angel wings on Tuesday, August 7th 2018 @ 7:26 a.m. with mommy and daddy by his side. We have been blessed beyond belief to be surrounded by so many people who loved our boy. He touched our lives in ways we never imagined. Thank you to everyone who has been with us on this journey. We love you, Maxi boy ♥️
Max and his beautiful family have been handed a path in life which no parent should ever have to navigate. A path that, as a parent myself, is unthinkable. Max's mom, Jenna, posted about Max recently and I have included his story and their long journey below, because what speaks better than a mother speaking from the heart. Please consider donating to a family who are full of love, grace, humility and courage. Max also has a beautiful sister, Amara, who is 4 years old. Together, Jenna, her partner Adam, and their daughter are dealing with something unimaginable. Let's help take some stress off their shoulders by contributing to his medical bills, travel expenses to visit him, childcare for Amara, and the list goes on....
June 4, 2018
If you're reading this, I would first like to say thank you for being here. The love this little boy has surrounding him is pretty incredible and I can't say how much we appreciate the support so many of you have given us. I always knew we had a pretty awesome community of friends and family, but the level of kindness and humanity we've witnessed is pretty humbling. Again, a heartfelt thank you.
It's taken me a while to get to this point. In wanting to write or share anything on social media. A lot has transpired in just a few short months I really don't even know if I've fully digested everything myself. Bear with me, as this first post will likely be pretty lengthy.
This past September I got a call from New York Presbyterian Weill Cornell Hospital. It was their appointment coordinator and she wanted to schedule us to be seen with their neurogeneticist to have whole exome testing done for Max. We were elated because my insurance wouldn't cover a second genetics test and we had already done a smaller one earlier in the year. Since the hospital wanted it done for research purposes, they covered the cost. The results would take up to six months to get but hopefully they could finally provide answers as to what was causing Max to be so developmentally delayed, what caused the feeding difficulties, what caused the rare form of epilepsy, etc...
While waiting, it seemed that Max's feeding issues were taking a turn for the worst. Even with a feeding tube (which we thought would fix most of the problems) we were dealing with intractable vomiting and three day long stretches of inconsolable crying. His little tummy was becoming so distended no matter how much we slowed down the feeds. ER visit after ER visit, dozens of X-rays, they all just kept coming back showing he had gas in his colon. It got to the point where we were relying on suppositories and enema's almost daily just to help with the relief and it seemed that the gas was directly correlated to how much/often he vomited. Meanwhile, my sweet boy was losing weight rapidly and no doctor seemed to know what was going on or what to fix.
It was the first week of January 2018 and the genetic results were in. Turns out, Adam and I are both carriers of a mutated gene called, AIMP2. It's so newly discovered that there is hardly any literature on it. Since we're both carriers, we have a 25% chance with each pregnancy of having an affected child like Max. He is the 4th known person in the world to have this. What makes Max's condition even more rare, is that the other three children are born to consanguineous parents (relatives). Mine and Adam's ethnic backgrounds aren't even in the same regions. This news was shocking and even though we were relieved they found an answer, it was frustrating that there wasn't much information on it.
The same week we got the genetic results, Max was admitted to the hospital one last time. The vomiting wouldn't let up and we wouldn't accept being sent home. He was a frightening 13 pounds. Two days after being admitted, he was given a PICC (or Central) line. It's a very thin, long catheter that's inserted through a vein in his arm that runs to a larger vein closer to his heart. Through this, they give him all the nutrition his body needs. For three long months, we watched our baby finally put on weight. And in that time, we did every test imaginable to figure out what was going on with his gut and why it wasn't working anymore. Even 1 ml an hour would cause his tummy to balloon. We even tried bowl rest for two of those months to no avail.
And then everything changed on March 9th. Max had a routine brain MRI that he was already scheduled to get at around 2 years old. The doctors requested a family meeting to discuss the results and we were taken into a room to be told our baby's condition is progressive. There's atrophy in his brain and part of the spinal cord. He could live, at best, to 10 years old so long as he is "healthy" otherwise. It breaks my heart that all that time spent trying to figure out some kind of acute problem, when in reality it was his brain simply shutting down certain functions of his body. His gut just stopped and couldn't process food anymore.
Max is currently in Bayside, Queens at a rehab/palliative/hospice center - St. Mary's Hospital for Children. It's still unfathomable to think he will never live at home with us again. Life is not the same and it will never be the same without him here. My heart aches every day wishing I could figure out a way to save him but there is nothing. The science isn't there yet but I will continue to advocate for him and pray that someday they find a way to safely modify genes for these rare cases.
I'll update more as time goes on, but for now we are trying to soak up every second we can with our sweet little Macki-boy.
Max and his beautiful family have been handed a path in life which no parent should ever have to navigate. A path that, as a parent myself, is unthinkable. Max's mom, Jenna, posted about Max recently and I have included his story and their long journey below, because what speaks better than a mother speaking from the heart. Please consider donating to a family who are full of love, grace, humility and courage. Max also has a beautiful sister, Amara, who is 4 years old. Together, Jenna, her partner Adam, and their daughter are dealing with something unimaginable. Let's help take some stress off their shoulders by contributing to his medical bills, travel expenses to visit him, childcare for Amara, and the list goes on....
June 4, 2018
If you're reading this, I would first like to say thank you for being here. The love this little boy has surrounding him is pretty incredible and I can't say how much we appreciate the support so many of you have given us. I always knew we had a pretty awesome community of friends and family, but the level of kindness and humanity we've witnessed is pretty humbling. Again, a heartfelt thank you.
It's taken me a while to get to this point. In wanting to write or share anything on social media. A lot has transpired in just a few short months I really don't even know if I've fully digested everything myself. Bear with me, as this first post will likely be pretty lengthy.
This past September I got a call from New York Presbyterian Weill Cornell Hospital. It was their appointment coordinator and she wanted to schedule us to be seen with their neurogeneticist to have whole exome testing done for Max. We were elated because my insurance wouldn't cover a second genetics test and we had already done a smaller one earlier in the year. Since the hospital wanted it done for research purposes, they covered the cost. The results would take up to six months to get but hopefully they could finally provide answers as to what was causing Max to be so developmentally delayed, what caused the feeding difficulties, what caused the rare form of epilepsy, etc...
While waiting, it seemed that Max's feeding issues were taking a turn for the worst. Even with a feeding tube (which we thought would fix most of the problems) we were dealing with intractable vomiting and three day long stretches of inconsolable crying. His little tummy was becoming so distended no matter how much we slowed down the feeds. ER visit after ER visit, dozens of X-rays, they all just kept coming back showing he had gas in his colon. It got to the point where we were relying on suppositories and enema's almost daily just to help with the relief and it seemed that the gas was directly correlated to how much/often he vomited. Meanwhile, my sweet boy was losing weight rapidly and no doctor seemed to know what was going on or what to fix.
It was the first week of January 2018 and the genetic results were in. Turns out, Adam and I are both carriers of a mutated gene called, AIMP2. It's so newly discovered that there is hardly any literature on it. Since we're both carriers, we have a 25% chance with each pregnancy of having an affected child like Max. He is the 4th known person in the world to have this. What makes Max's condition even more rare, is that the other three children are born to consanguineous parents (relatives). Mine and Adam's ethnic backgrounds aren't even in the same regions. This news was shocking and even though we were relieved they found an answer, it was frustrating that there wasn't much information on it.
The same week we got the genetic results, Max was admitted to the hospital one last time. The vomiting wouldn't let up and we wouldn't accept being sent home. He was a frightening 13 pounds. Two days after being admitted, he was given a PICC (or Central) line. It's a very thin, long catheter that's inserted through a vein in his arm that runs to a larger vein closer to his heart. Through this, they give him all the nutrition his body needs. For three long months, we watched our baby finally put on weight. And in that time, we did every test imaginable to figure out what was going on with his gut and why it wasn't working anymore. Even 1 ml an hour would cause his tummy to balloon. We even tried bowl rest for two of those months to no avail.
And then everything changed on March 9th. Max had a routine brain MRI that he was already scheduled to get at around 2 years old. The doctors requested a family meeting to discuss the results and we were taken into a room to be told our baby's condition is progressive. There's atrophy in his brain and part of the spinal cord. He could live, at best, to 10 years old so long as he is "healthy" otherwise. It breaks my heart that all that time spent trying to figure out some kind of acute problem, when in reality it was his brain simply shutting down certain functions of his body. His gut just stopped and couldn't process food anymore.
Max is currently in Bayside, Queens at a rehab/palliative/hospice center - St. Mary's Hospital for Children. It's still unfathomable to think he will never live at home with us again. Life is not the same and it will never be the same without him here. My heart aches every day wishing I could figure out a way to save him but there is nothing. The science isn't there yet but I will continue to advocate for him and pray that someday they find a way to safely modify genes for these rare cases.
I'll update more as time goes on, but for now we are trying to soak up every second we can with our sweet little Macki-boy.
Organizer
Jenna Heller
Organizer
Brooklyn, NY