Please HELP our fellow PerSister as she cares for her baby boy in and out of BC Hospital.

UPDATE!! OLLIE RECEIVED A LIVER TRANSPLANT FEB 8!

This family needs our help now more than ever – from his mother:

I know this looks ugly, but this is actually beautiful. Liver transplant surgery was a success, and he did very well ❤

Plan tonight is to manage pain, and monitor labs. We’ll have a longer term plan after rounds tomorrow morning.

Once again, any shares of and donations to our GoFundMe is incredibly appreciated, as we will both be missing quite a bit of work: www.gofundme.com/capecodollie

And tonight, Ollie was given a new start of life, one with a lot less hospitalizations, much fewer illnesses, and a “normal” life (despite lifelong immunosuppressant therapy) in which he can enjoy a Fenway Frank, and fresh caught Cape Cod fish, all because of an organ donor.

You can register here, or at your local RMV: https://www.organdonor.gov/register.html

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UPDATE! OLLIE NOW NEEDS A LIVER TRANSPLANT.  You can donate to help this family on a new “GoFund Me” page: https://www.gofundme.com/capecodollie

Meaghan Mort and her husband John are trying to keep their heads above water while caring for their son, Ollie, who has a rare condition that will most likely result in a liver transplant.  Ollie has been in and out of Boston Children’s Hospital since he was five days old.  Meaghan’s personal account of their story is below.

They need our help! Please share this page, help us help Meaghan, John and Ollie.

Meaghan has testified in front of state legislative committees, sharing her own stories on behalf of all of us.  Her most recent testimony was in favor of Paid Family Medical Leave insurance. She shared her first-hand experience having a baby with a rare condition which has led to her missing work as a nurse, losing 1/2 of her family’s income, facing the prospect of losing medical insurance and adding financial worries to the stress of having a little boy facing health issues most of us will never imagine.

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Ollie is now back at BCH

We are asking you to help Meaghan, John and Ollie.

Meaghan and John raised money for Boston Children’s Hospital, grateful for the care they gave Ollie and the care the provide for parents like then, during their stay. Now they need help, John is working back-to-back shifts as a cook trying to earn enough to keep the bills paid, while Meaghan stays with Ollie at BCH.  They don’t want a GoFundMe page, so we are putting together various ways you can help them more directly.

Please consider a donation, a gift, an Amazon purchase – every little bit helps:

When Meaghan, John and Ollie did the Boston Children’s Hospital Walk in May, (raising $ for BCH) she posted about Ollie’s condition and what they’d been through – shared below photos.

Ollie was born with a Urea Cycle Disorder (one of several) called Ornithine Transcarbamylase Deficiency (aka OTCD), a metabolic disorder. What this means, put simply, is due to a defect in the urea cycle in his liver, he cannot tolerate protein, and this causes his ammonia levels to rise to potentially fatal levels. His journey started (strangely) with hypoglycemia, which, as of yet, we have been unable to determine any correlation between OTCD and hypoglycemia. It became untreatable where he was born (CCH) and he was transferred to Tufts in Boston where they treated it somewhat successfully. However, two days into his stay at Tufts, after noticeable alterations in his respiratory pattern, Tufts discovered his ammonia level was 745. Normal range for infants is 16-47. He was in crisis, and was transferred to Boston Childrens Hospital, where within 2 1/2 hours of Tufts finding that lab value, he was put on dialysis to filter the ammonia out of his blood, intubated, and put on more meds than I have ever been on in my life, the most important of which (Ammonul, an ammonia scavenger) costs $70K+/bag.

Ollie was critically unstable, and John and I were told the next morning that the next 24 hours would tell us whether or not our son, now 6 days old, would survive. He was basically comatose, not moving, not opening his eyes, silent, with a strange breathing pattern (possibly caused by brain damage the extent of which we had no clue of at the time). In addition to all of that, he suffered a seizure episode due to the high ammonia levels, further exacerbating any potential brain damage. We had him baptized in his incubator crib, because we did not know if he would live to see the next day.Fortunately, the team here at Boston Childrens was able to save his life, and a week and a half later he FINALLY started to move by himself, open his eyes, grip our fingers, respond to touch and, the best thing, cry. We finally heard our son after more than a week of silence.

Today, St. Patricks Day, his last IV was taken out and, though he still remains on an NG tube feed (he can eat by bottle, we just HAVE to be sure he gets the appropriate nutrition, on time, exactly), and we can finally walk around the room with him. He looks and sounds like a “normal” baby (you wouldn’t know he has an illness just looking at him), and I am grateful for every fuss. No matter the outcome, we became prepared to give our son the best life he could have. I will never forget the silence of our son.

My pregnancy was unremarkable, and there was no way to predict this. I had all the appropriate testing done, I had all the usual visits, everything was normal. But as soon as the umbilical cord was cut, Ollies ammonia was rising because the protein we were feeding him (through breastmilk and bottle) was no longer getting filtered through my liver (though I do have a much more mild form of the same disorder myself as it turns out).

With OTCD, the component in the urea cycle that helps process protein, a particular enzyme, is virtually not there, especially in Ollies case. Because of this, if he has any protein, it will not get filtered and his ammonia levels will rise to potentially fatal levels. Unless Ollie undergoes a liver transplant (which is very likely in his future) he will be on medications and a very specific no-protein diet for the rest of his life.

OTCD is listed on the National Organization of Rare Diseases. It is one of those “invisible illnesses” that no one will ever see. Ollie will be given a card that will enable him to be triaged at the ER immediately, should we think that he is getting sick, or there is a possibility that his ammonia levels are high. So when you see something like that happen at the ER, know that there is a good reason for it. If Ollies ammonia levels rise, it has the potential to cause brain damage, or kill him.

Boston Children’s Hospital has done so much for us, including providing us a place to stay while Ollie is in the NICU (where he still remains, as well as he is doing now). The teams here have been beyond phenomenal, and I could never have asked for more as far as treatment for our son goes. He will be followed, probably for the rest of his life, by the metabolic team here and for that I am eternally grateful.
Because of the very personal nature of everything going on, and having to answer so many questions about so many things we have limited awareness of our situation to a very few people until now. But I hope, if you cannot walk with me, that you will share when I do post the fundraising page for the hospital, and donate if you can. We almost lost our son, and because of the dedicated doctors and EXTRAORDINARY nurses here, who I have learned so much from, our son is alive.

Because of the very personal nature of everything going on, and having to answer so many questions about so many things we have limited awareness of our situation to a very few people until now. Ollie’s team name comes from the childrens catchphrase that indicates it’s safe to come out of hiding during a game. It became time for us to come out of hiding and share Ollie’s experience, raising awareness of not just Urea Cycle Disorders, but everything that goes along with having an “invisible illness”. I hope, if you cannot walk with me, that you will share when I do post the fundraising page for the hospital, and donate if you can. We almost lost our son, and because of the dedicated doctors and EXTRAORDINARY nurses here, who I have learned so much from, our son is alive.

Link to their full BCH Walk here: http://fundraise.childrenshospital.org/site/TR/Walk/Walk?team_id=6787&pg=team&fr_id=1530
More about OTCD here: http://nucdf.org
https://www.rarediseasesnetwork.org/cms/UCDC

Again, Ollie is now back at BCH.  Please share this page!

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