Addyson Strong-OneMillionActsOfGood
Donation protected
Hello World, Are you ready to be a part of something big? Yes? Well then, meet Ms. Addyson! She's six years old, and has the the heart of an angel, the strength of a warrior, and the courage of a hero.
She recently told her mom she'd love to see the northern lights. So if you can help us raise enough money to fund their trip to see them (and some of her medical care maintenance that insurance doesn't cover); I know it would mean the world to her and her family.
Here's a quick video of her recent hospital stay at Johns Hopkins Childrens Center, and I'm asking you to support her road to recovery and make a wish come true.
https://video214.com/play/8uc97QWcesk5nzx8WLloxg/s/dark
#AddysonStrong
#OneMillionActsOfGood
A note from her mother to me: 'The story of Addyson and her adventures.'
---begin note---
Welcome home Addyson! When Addyson was born she did well until around 3 weeks when she began go limp and turn blue. We were first told at this point it was her lungs, so we were referred to Mt. Washington Pediatric Hospital where we ended up with the best pulmonology doctor we could have asked for. She was amazing with Addyson and trusted our parental instinct.
During one appointment in particular she looked at me and said, "do you think there is something wrong? Is she different than your son was?" I said, "Yes, and yes." She said, "Drive her straight to Hopkins. I am calling them to let them know you are on your way." A huge thanks to her, because she got us to the hospital who could help her. We were admitted to Hopkins when Addyson was 5 weeks old.
We stayed there for about a week when it was determined that Addyson would go home on a heart and lung monitor, and be followed by both pulmonary and cardiology specialists. Addyson was diagnosed with GERD, no lacrimal glands, an ear pit, a PFO, and Pericardial effusion. Pericardial effusion ("fluid around the heart") is an abnormal accumulation of fluid in the pericardial cavity. Because of the limited amount of space in the pericardial cavity, fluid accumulation leads to an increased intrapericardial pressure which can negatively affect heart function. Patent foramen ovale (PFO): PFOs can only occur after birth when the foramen ovale fails to close. The foramen ovale is a hole in the wall between the left and right atria. Having no lacrimal glands means that she cannot cry tears, she cries, but no tears flow. They are unsure why her lacrimal glands did not develop.
Addyson's first seizure-9 months old-We felt good that Addyson was getting the care that she needed, and we were able to get her home with us as a family. Then, at 9 months old Addyson had her first Ambulance ride. We were at a family cookout, when she started seizing. We were transported to our local ER where they determined that she suffered from a febrile seizure. She went on to have a few more that weekend. After this we noticed that she would get a fever every 21 days (which would last for 3-5 days), but she would not appear sick except for the fever and seizure. We tracked these for a few months, consulted with our pediatrician (who eventually referred us to a handful of doctors to include; rheumatology, infectious disease, hematology/oncology specialists, and more). During our path of doctors, we came across a rheumatologist who said, "I think she has periodic fever syndrome, but there are a handful of them and we can only test for a few of them." He felt confident that he would have an ENT take out her tonsils and adenoids, and hopefully get her a few months without fevers. We did the surgery at 22months old, and it worked, she made it through almost a year with no fevers. At about 15 months post-surgery, she started again with fevers so we went back to Rheum and ENT thinking that maybe her tonsils had grown back, and that's why the fevers were back. Sadly this was not the case, but the fevers were back. We went back to our pediatrician who said that he had found a clinical trial at NIH for periodic fevers and he was willing to send her file over. Luckily that February we were headed to NIH for the start of the clinical trial. And guess what? The meds worked!....for over a year, and then she had a few breakthrough fevers. They added in an injectable medication, which wasn't meant to stop the fevers, but would help her feel more comfortable.
Then, over a year ago (2017) Addyson started with chronic GI complainants. When she started pushing food away and loosing weight we knew it was more serious. After multiple GI appointments, the medical professionals started performing tests to figure out if they could better determine what was wrong. She had a handful of tests in a few short months:
Barium Enema Test (JUNE )
STOMACH clean out via NG Tube / Colonoscopy and Endoscopy (JULY)
Anorectal Manometry (AUGUST)
Rectal Biopsy to confirm HIRSCHSPRUNGS DISEASE (SEPT)
Partial colon resection and cecostomy (OCT)
During all these tests we were eventually sent to a GI Surgeon. He has been amazing. Addyson likes him and feels that he is doing his best to help her. We feel that he understands her disease, and is providing the best treatment options. She had her recent surgery in OCT of 2017 to remove the bad portion of her sigmoid colon. They removed 30cm. The sigmoid colon is 45cm; therefore, the remaining colon is not that great (according to her GI doctor). She had a partial colon resection and cecostomy tube insertion along with a 7 day hospital stay. She is now doing colon flushes twice a day with 700mls of solution. Her colon is still not working as they had hoped, but we remain hopeful that this will change. The surgeon is hoping that we can reverse the cecostomy by adulthood, but it all depends on what her colon function is.
Throughout all of this we learned a few things about ourselves and Miss Addyson. She is the strongest little girl we know. She's gone through appointment after appointment and been told, "We are unsure of what's wrong or why this is happening" multiple times.
Ms. Addyson has shown us strength, independence and determination. She has GRIT. She might get knocked down for a few hours after an appointment, but watch out because nothing keeps her down for long. Her emotions might occasionally get the best of her, but she will push her own fears aside to make someone else smile. Every time she gets to post-op she is more concerned about the other kids than herself.
She learns the medical language and listens to understand what medication protocol needs to be done at home. Once home she learns how to administer her own meds / flushes. She wants that independence and she shows us that she is capable of achieving it. We, as parents, have learned that you fight the fight right along with your child. You will use your voice to advocate for your child in a way you never thought would be needed. You will fall into the understanding of medical language that goes along with having medical complexities in your daily routine. You will tell the doctors when they are missing something, because you feel strongly about the details. You have lived the case for the past 6 years. You will quiet your child's fears while knowing that there are some valid points to their fear, but you don't want them going into surgery thinking about them.
You hand them off to the surgeons, and you sleep in hospital chairs. You put on your brave face for the visitors, but breakdown while the child is asleep. You vent to the nurses and thank them for moving around you while your child is sleeping in your arms. You do it all because the love you have for your child is unbreakable. There is nothing like it.
---end note---
To all of you reading this message-
Thank you for sharing this moment. Please help make a difference. Be kind. Donate whatever you can to help this family get Ms. Addyson to see the Northern lights. Additional money raised after costs for the trip to fund them to see the northern lights will be spent paying for medical supplies insurance doesn't cover due to current medical code standards.
Ms. Addyson's journey has touched my heart, and I'd love to help her get to see that lights and her parents afford the medical costs associated with sustaining her precious life.
At the moment her surgical bill is over $2K, and weekly visits cost between $40-$80. One mini-tube is $135, and she needs to keep one at school, and have one with her at all times. If it falls out we have a 2-hour window to get it back in before the site starts to close. Her saline and other meds and supplies cost over $150/month. These costs have gone down after months of searching for alternate avenues, and they've finally found a supply company to supply some of her cecostomy medications, and are truly grateful.
#OneMillionActsOfGood
Give today. Support #AddysonStrong
Ellen DeGeneres encouraged the world to support Cheerios and the #OneMillionActsOfGood campaign.
I, too, hope you choose to be a part of something big and contribute to this families needs.
She recently told her mom she'd love to see the northern lights. So if you can help us raise enough money to fund their trip to see them (and some of her medical care maintenance that insurance doesn't cover); I know it would mean the world to her and her family.
Here's a quick video of her recent hospital stay at Johns Hopkins Childrens Center, and I'm asking you to support her road to recovery and make a wish come true.
https://video214.com/play/8uc97QWcesk5nzx8WLloxg/s/dark
#AddysonStrong
#OneMillionActsOfGood
A note from her mother to me: 'The story of Addyson and her adventures.'
---begin note---
Welcome home Addyson! When Addyson was born she did well until around 3 weeks when she began go limp and turn blue. We were first told at this point it was her lungs, so we were referred to Mt. Washington Pediatric Hospital where we ended up with the best pulmonology doctor we could have asked for. She was amazing with Addyson and trusted our parental instinct.
During one appointment in particular she looked at me and said, "do you think there is something wrong? Is she different than your son was?" I said, "Yes, and yes." She said, "Drive her straight to Hopkins. I am calling them to let them know you are on your way." A huge thanks to her, because she got us to the hospital who could help her. We were admitted to Hopkins when Addyson was 5 weeks old.
We stayed there for about a week when it was determined that Addyson would go home on a heart and lung monitor, and be followed by both pulmonary and cardiology specialists. Addyson was diagnosed with GERD, no lacrimal glands, an ear pit, a PFO, and Pericardial effusion. Pericardial effusion ("fluid around the heart") is an abnormal accumulation of fluid in the pericardial cavity. Because of the limited amount of space in the pericardial cavity, fluid accumulation leads to an increased intrapericardial pressure which can negatively affect heart function. Patent foramen ovale (PFO): PFOs can only occur after birth when the foramen ovale fails to close. The foramen ovale is a hole in the wall between the left and right atria. Having no lacrimal glands means that she cannot cry tears, she cries, but no tears flow. They are unsure why her lacrimal glands did not develop.
Addyson's first seizure-9 months old-We felt good that Addyson was getting the care that she needed, and we were able to get her home with us as a family. Then, at 9 months old Addyson had her first Ambulance ride. We were at a family cookout, when she started seizing. We were transported to our local ER where they determined that she suffered from a febrile seizure. She went on to have a few more that weekend. After this we noticed that she would get a fever every 21 days (which would last for 3-5 days), but she would not appear sick except for the fever and seizure. We tracked these for a few months, consulted with our pediatrician (who eventually referred us to a handful of doctors to include; rheumatology, infectious disease, hematology/oncology specialists, and more). During our path of doctors, we came across a rheumatologist who said, "I think she has periodic fever syndrome, but there are a handful of them and we can only test for a few of them." He felt confident that he would have an ENT take out her tonsils and adenoids, and hopefully get her a few months without fevers. We did the surgery at 22months old, and it worked, she made it through almost a year with no fevers. At about 15 months post-surgery, she started again with fevers so we went back to Rheum and ENT thinking that maybe her tonsils had grown back, and that's why the fevers were back. Sadly this was not the case, but the fevers were back. We went back to our pediatrician who said that he had found a clinical trial at NIH for periodic fevers and he was willing to send her file over. Luckily that February we were headed to NIH for the start of the clinical trial. And guess what? The meds worked!....for over a year, and then she had a few breakthrough fevers. They added in an injectable medication, which wasn't meant to stop the fevers, but would help her feel more comfortable.
Then, over a year ago (2017) Addyson started with chronic GI complainants. When she started pushing food away and loosing weight we knew it was more serious. After multiple GI appointments, the medical professionals started performing tests to figure out if they could better determine what was wrong. She had a handful of tests in a few short months:
Barium Enema Test (JUNE )
STOMACH clean out via NG Tube / Colonoscopy and Endoscopy (JULY)
Anorectal Manometry (AUGUST)
Rectal Biopsy to confirm HIRSCHSPRUNGS DISEASE (SEPT)
Partial colon resection and cecostomy (OCT)
During all these tests we were eventually sent to a GI Surgeon. He has been amazing. Addyson likes him and feels that he is doing his best to help her. We feel that he understands her disease, and is providing the best treatment options. She had her recent surgery in OCT of 2017 to remove the bad portion of her sigmoid colon. They removed 30cm. The sigmoid colon is 45cm; therefore, the remaining colon is not that great (according to her GI doctor). She had a partial colon resection and cecostomy tube insertion along with a 7 day hospital stay. She is now doing colon flushes twice a day with 700mls of solution. Her colon is still not working as they had hoped, but we remain hopeful that this will change. The surgeon is hoping that we can reverse the cecostomy by adulthood, but it all depends on what her colon function is.
Throughout all of this we learned a few things about ourselves and Miss Addyson. She is the strongest little girl we know. She's gone through appointment after appointment and been told, "We are unsure of what's wrong or why this is happening" multiple times.
Ms. Addyson has shown us strength, independence and determination. She has GRIT. She might get knocked down for a few hours after an appointment, but watch out because nothing keeps her down for long. Her emotions might occasionally get the best of her, but she will push her own fears aside to make someone else smile. Every time she gets to post-op she is more concerned about the other kids than herself.
She learns the medical language and listens to understand what medication protocol needs to be done at home. Once home she learns how to administer her own meds / flushes. She wants that independence and she shows us that she is capable of achieving it. We, as parents, have learned that you fight the fight right along with your child. You will use your voice to advocate for your child in a way you never thought would be needed. You will fall into the understanding of medical language that goes along with having medical complexities in your daily routine. You will tell the doctors when they are missing something, because you feel strongly about the details. You have lived the case for the past 6 years. You will quiet your child's fears while knowing that there are some valid points to their fear, but you don't want them going into surgery thinking about them.
You hand them off to the surgeons, and you sleep in hospital chairs. You put on your brave face for the visitors, but breakdown while the child is asleep. You vent to the nurses and thank them for moving around you while your child is sleeping in your arms. You do it all because the love you have for your child is unbreakable. There is nothing like it.
---end note---
To all of you reading this message-
Thank you for sharing this moment. Please help make a difference. Be kind. Donate whatever you can to help this family get Ms. Addyson to see the Northern lights. Additional money raised after costs for the trip to fund them to see the northern lights will be spent paying for medical supplies insurance doesn't cover due to current medical code standards.
Ms. Addyson's journey has touched my heart, and I'd love to help her get to see that lights and her parents afford the medical costs associated with sustaining her precious life.
At the moment her surgical bill is over $2K, and weekly visits cost between $40-$80. One mini-tube is $135, and she needs to keep one at school, and have one with her at all times. If it falls out we have a 2-hour window to get it back in before the site starts to close. Her saline and other meds and supplies cost over $150/month. These costs have gone down after months of searching for alternate avenues, and they've finally found a supply company to supply some of her cecostomy medications, and are truly grateful.
#OneMillionActsOfGood
Give today. Support #AddysonStrong
Ellen DeGeneres encouraged the world to support Cheerios and the #OneMillionActsOfGood campaign.
I, too, hope you choose to be a part of something big and contribute to this families needs.
Organizer and beneficiary
LeAnna Gottlich
Organizer
Arnold, MD
Michelle Daugherty
Beneficiary
