Johnny's BIG WISH!
Donation protected
STORY UPDATE:
It has been two years since we started this campaign, and we have been truly touched by the generosity of our friends, and from people who don’t even know us!
John will be twelve this year, and, as the medical literature has suggested, the pain and problems, associated with his genetic disorders, have sadly increased.
In the course of the past two years, Johnny has experienced an ever-increasing level of pain and suffering. We are grateful for the “good days” and grateful to have this wonderful adventure to look forward to, on the “not-so-good” days.
We have seen many doctors, and specialists and continue to seek the advice of experts, in regards to his current list of diagnosis, which currently includes:
•Unspecified Connective Tissue Disorder (Previously classified as GHSD which is also a connective tissue disorder)
•”BMP2“ Bone Morphogenetic Protein2 (A newer diagnosis, after new genetic testing)
•Dysautonomia (autonomic nervous system dysfunction)
•Small Fiber Neuropathy (For John, this often causes severe nerve pain-a terrible burning sensation-over his entire body)
•Still in question: Charcott-Marie-Tooth (CMT) A degenerative Neuromuscular Disease… sometimes these types of diseases take years to diagnose)
John also has Symptoms of:
*Postural Orthostatic Tachycardia Syndrome (POTS)
*Mast Cell Activation Syndrome (MCAS) or possibly, Acute Urticaria (Unexpected allergic reactions to random things)
He suffers almost-daily bouts of severe abdominal pain, fatigue, nausea, joint pain and, often excruciating, nerve pain.
Also during the past two years, we have sold many possessions, paid off a lot of debt, and done some research about how climate can effect people with chronic pain.
We have purchased a used RV, made possible by the generous donations we have received, and also, by hard work, saving, selling our stuff, and finally, taking loans…. I know, I know, I said we wanted to get OUT of debt, but after two years, we have realized that time is slipping away, and we don’t want to miss our opportunity to make Johnny’s BIG WISH come true, while he is still able to enjoy it!
At this time, we have also decided that it would be in Johnny’s best interests, to seek a better climate for him to live in, one where the weather isn’t constantly changing, triggering terrible pain flares.
We would also like to use this BIG WISH trip, to increase awareness of chronic pain in children… something we had never heard of, before our son began suffering with it.
If you are reading this, thank you for caring! If you have donated or shared this campaign, thank you for caring! If you have taken the time to look up the disorders listed above, we hope you have a new awareness of some of the causes and effects of chronic pain in children,…and thank you, so much, for caring! God bless you all!
*********************************************************************************************
The Short Version of this story:
Johnny is a young boy (almost 10) who has been diagnosed with two rare genetic disorders. These disorders cause him to suffer daily, with a host of problems and make it very difficult for him to do "normal kid stuff", like play sports, or go to school. But Johnny doesn't let those problems get him down. He is an upbeat kid with an easy smile and a great sense of humor. He loves to build things, take things apart, invent things, and explore. He loves his family and his pets and his BIG WISH is to go on an RV-road trip-adventure, with his family! Because of the potentially progressive nature of his genetic disorders, Johnny's Mom & Dad are doing everything they can, to make Johnny's BIG WISH come true, while he is still well enough to enjoy it. Donations of any amount, are greatly appreciated! Sharing this campaign will also help! Thank you so much, for donating and/or sharing!
The Long Version of this story:
How to begin... I guess you could say this all started when I shared the following post with my friends on Facebook... so I guess I'll just share the post! But before I do, I want to thank all of my friends for reaching out to me. The ones who replied to my post, telling me I should start a gofundme for my little boy, and for the ones who reached out to me privately, doing their best to convince me that I shouldn't be afraid to ask for help, and to accept it when it's offered. I can't even think about it without tears in my eyes. Thank you for caring about Johnny, our family, and me. It means so much!
September, 2018
I was watching Johnny play on the beach last week when it really hit me that I don’t know how long he will feel well enough to be as active as he wants to be. Many people with his condition experience widespread pain and discomfort as they get older, often starting when they enter puberty. Many of them deal with multiple debilitating chronic conditions and spend most of their days seeking better doctors, second opinions and pain relief. Just thinking about it fills me with anxiety and brings tears to my eyes.
I’m not a dramatic person and I’m not sharing this because I’m seeking sympathy or attention. It’s just something that weighs on my mind. It’s something that effects me every day. I’m unable to go to bed at night without my emergency bag packed. I no longer feel free to commit to being there for other people. I can’t leave my (almost) 10 year old alone, while I walk my dog, without worrying, and I dread that late night knock on the door, even more than ever. When he’s in pain I worry. When he’s playing with his friends, I worry. When he takes a shower, I worry. I never know when he is going to dislocate a joint or twist something or lose feeling in his legs, or have chest pain, or feel sick, or have stomach pain, or fall down and hurt himself. Even going to the beach causes concern. I have to make sure he takes regular breaks so he won’t collapse because he’s exhausted himself.
Anyway, if you’ve read this far, you are a good friend and I thank you for caring. .
Sitting on the beach last week I shared my fears with my sweet husband and told him that I want John to have as much fun as he can, while he can. Who knows, maybe he will never develop all of the symptoms and problems associated with Connective Tissue Disorders. Maybe he’ll even improve as he gets older, but judging by how much has changed in the past year alone, I wouldn’t bet on it.
So the next day I asked John what he would want to do, if he could choose, and money wasn’t an issue. You know what he said? He said he wants to go on an RV road-trip adventure! He wants to go visit his best friend, out in Idaho, and his Grandparents and Auntie and his cousin, in NC. He wants to go to FL to visit our relatives there and to play on the beach.
And you know what?! I’m going to make that happen! So that’s our new goal! We are going to sell whatever we can (except the house), stick to a tight budget, and do whatever it takes, so we can take Johnny on that trip! Last Saturday we had a yard sale! It’s a drop in the bucket, but it was enough to get us excited and give us some momentum! Even Johnny contributed, donating the money he made at our yard sale. It feels good to have such a compelling goal and it helps ease my feelings of helplessness. So, if you are still reading this, and frankly, I’d be shocked if anyone is, please wish us luck! We’re going to need it!
It was after posting this to FB, that my friends (who've watched as John has gone from a seemingly healthy boy, to a boy who suffers with multiple chronic health problems, in just over a year) started telling me I should create a gofundme campaign and let people help us make Johnny's BIG WISH a reality!
As I write this, he's been down with chest pain for 5 days... and as I watch him struggle with that, I wonder if it's too late. But no, I know he will feel better again, and he will be able to fulfill his BIG WISH! But it adds an urgency to my mission. I know his condition could worsen as he grows... I've seen it happening already, as he's gone through a recent growth spurt. And I am determined that he will have the big adventure he so desperately wants, BEFORE he is unable to enjoy it!
This year alone, John has suffered with Headaches, Insomnia, Nausea, Gastrointestinal Distress, Joint Pain, Multiple Dislocations of his Joints, Subluxations, Anxiety, Chest Pain, Neck Pain, Fatigue, Loss of feeling in his legs, Collapse, Brain Fog, Fractures, Mood Swings, Memory Problems, and more...
He missed so many days at school, and felt sick so often, that we finally decided it would be better for him to go back to homeschooling.
I pray every day, that he will never be permanently dependent on a wheel chair, due to chronic pain and dislocations, but he has already had to use one many times, and we keep one in our vehicle, for emergencies. The only problem is, we have no wheel chair ramp, and when he injures himself, I have to carry him in and out of the house!
I am a small woman, and he is a growing boy! So whatever funds are left over, after Johnny's BIG WISH is fulfilled (if any), will go toward building a wheelchair ramp for our home. And if, by some miracle, there is anything left after that, I will put it in a special fund so that we can continue to do fun things with him, and offer him educational experiences that will enrich his life and help him see how big the world is, and how much love is out there, just waiting for him.
I know there are so many people in need, all over the world, and I am so reluctant to ask... but my friends have spoken! And I will listen to their loving council. "Let people help you-people want to help you!", is what they've told me, so here I am, holding out hope that they are right!
Thank you from the bottom of my heart, for making me feel less alone. For giving me hope. For offering my son a chance to experience joy. And for caring enough to read this, very long, post!
Sincerely,
Johnny Awesome's Mommy.
PS. Johnny's Birthday is coming up. He will be 10. Maybe, just maybe, we can make this the best birthday gift ever?! :D
It has been two years since we started this campaign, and we have been truly touched by the generosity of our friends, and from people who don’t even know us!
John will be twelve this year, and, as the medical literature has suggested, the pain and problems, associated with his genetic disorders, have sadly increased.
In the course of the past two years, Johnny has experienced an ever-increasing level of pain and suffering. We are grateful for the “good days” and grateful to have this wonderful adventure to look forward to, on the “not-so-good” days.
We have seen many doctors, and specialists and continue to seek the advice of experts, in regards to his current list of diagnosis, which currently includes:
•Unspecified Connective Tissue Disorder (Previously classified as GHSD which is also a connective tissue disorder)
•”BMP2“ Bone Morphogenetic Protein2 (A newer diagnosis, after new genetic testing)
•Dysautonomia (autonomic nervous system dysfunction)
•Small Fiber Neuropathy (For John, this often causes severe nerve pain-a terrible burning sensation-over his entire body)
•Still in question: Charcott-Marie-Tooth (CMT) A degenerative Neuromuscular Disease… sometimes these types of diseases take years to diagnose)
John also has Symptoms of:
*Postural Orthostatic Tachycardia Syndrome (POTS)
*Mast Cell Activation Syndrome (MCAS) or possibly, Acute Urticaria (Unexpected allergic reactions to random things)
He suffers almost-daily bouts of severe abdominal pain, fatigue, nausea, joint pain and, often excruciating, nerve pain.
Also during the past two years, we have sold many possessions, paid off a lot of debt, and done some research about how climate can effect people with chronic pain.
We have purchased a used RV, made possible by the generous donations we have received, and also, by hard work, saving, selling our stuff, and finally, taking loans…. I know, I know, I said we wanted to get OUT of debt, but after two years, we have realized that time is slipping away, and we don’t want to miss our opportunity to make Johnny’s BIG WISH come true, while he is still able to enjoy it!
At this time, we have also decided that it would be in Johnny’s best interests, to seek a better climate for him to live in, one where the weather isn’t constantly changing, triggering terrible pain flares.
We would also like to use this BIG WISH trip, to increase awareness of chronic pain in children… something we had never heard of, before our son began suffering with it.
If you are reading this, thank you for caring! If you have donated or shared this campaign, thank you for caring! If you have taken the time to look up the disorders listed above, we hope you have a new awareness of some of the causes and effects of chronic pain in children,…and thank you, so much, for caring! God bless you all!
*********************************************************************************************
The Short Version of this story:
Johnny is a young boy (almost 10) who has been diagnosed with two rare genetic disorders. These disorders cause him to suffer daily, with a host of problems and make it very difficult for him to do "normal kid stuff", like play sports, or go to school. But Johnny doesn't let those problems get him down. He is an upbeat kid with an easy smile and a great sense of humor. He loves to build things, take things apart, invent things, and explore. He loves his family and his pets and his BIG WISH is to go on an RV-road trip-adventure, with his family! Because of the potentially progressive nature of his genetic disorders, Johnny's Mom & Dad are doing everything they can, to make Johnny's BIG WISH come true, while he is still well enough to enjoy it. Donations of any amount, are greatly appreciated! Sharing this campaign will also help! Thank you so much, for donating and/or sharing!
The Long Version of this story:
How to begin... I guess you could say this all started when I shared the following post with my friends on Facebook... so I guess I'll just share the post! But before I do, I want to thank all of my friends for reaching out to me. The ones who replied to my post, telling me I should start a gofundme for my little boy, and for the ones who reached out to me privately, doing their best to convince me that I shouldn't be afraid to ask for help, and to accept it when it's offered. I can't even think about it without tears in my eyes. Thank you for caring about Johnny, our family, and me. It means so much!
September, 2018
I was watching Johnny play on the beach last week when it really hit me that I don’t know how long he will feel well enough to be as active as he wants to be. Many people with his condition experience widespread pain and discomfort as they get older, often starting when they enter puberty. Many of them deal with multiple debilitating chronic conditions and spend most of their days seeking better doctors, second opinions and pain relief. Just thinking about it fills me with anxiety and brings tears to my eyes.
I’m not a dramatic person and I’m not sharing this because I’m seeking sympathy or attention. It’s just something that weighs on my mind. It’s something that effects me every day. I’m unable to go to bed at night without my emergency bag packed. I no longer feel free to commit to being there for other people. I can’t leave my (almost) 10 year old alone, while I walk my dog, without worrying, and I dread that late night knock on the door, even more than ever. When he’s in pain I worry. When he’s playing with his friends, I worry. When he takes a shower, I worry. I never know when he is going to dislocate a joint or twist something or lose feeling in his legs, or have chest pain, or feel sick, or have stomach pain, or fall down and hurt himself. Even going to the beach causes concern. I have to make sure he takes regular breaks so he won’t collapse because he’s exhausted himself.
Anyway, if you’ve read this far, you are a good friend and I thank you for caring. .
Sitting on the beach last week I shared my fears with my sweet husband and told him that I want John to have as much fun as he can, while he can. Who knows, maybe he will never develop all of the symptoms and problems associated with Connective Tissue Disorders. Maybe he’ll even improve as he gets older, but judging by how much has changed in the past year alone, I wouldn’t bet on it.
So the next day I asked John what he would want to do, if he could choose, and money wasn’t an issue. You know what he said? He said he wants to go on an RV road-trip adventure! He wants to go visit his best friend, out in Idaho, and his Grandparents and Auntie and his cousin, in NC. He wants to go to FL to visit our relatives there and to play on the beach.
And you know what?! I’m going to make that happen! So that’s our new goal! We are going to sell whatever we can (except the house), stick to a tight budget, and do whatever it takes, so we can take Johnny on that trip! Last Saturday we had a yard sale! It’s a drop in the bucket, but it was enough to get us excited and give us some momentum! Even Johnny contributed, donating the money he made at our yard sale. It feels good to have such a compelling goal and it helps ease my feelings of helplessness. So, if you are still reading this, and frankly, I’d be shocked if anyone is, please wish us luck! We’re going to need it!
It was after posting this to FB, that my friends (who've watched as John has gone from a seemingly healthy boy, to a boy who suffers with multiple chronic health problems, in just over a year) started telling me I should create a gofundme campaign and let people help us make Johnny's BIG WISH a reality!
As I write this, he's been down with chest pain for 5 days... and as I watch him struggle with that, I wonder if it's too late. But no, I know he will feel better again, and he will be able to fulfill his BIG WISH! But it adds an urgency to my mission. I know his condition could worsen as he grows... I've seen it happening already, as he's gone through a recent growth spurt. And I am determined that he will have the big adventure he so desperately wants, BEFORE he is unable to enjoy it!
This year alone, John has suffered with Headaches, Insomnia, Nausea, Gastrointestinal Distress, Joint Pain, Multiple Dislocations of his Joints, Subluxations, Anxiety, Chest Pain, Neck Pain, Fatigue, Loss of feeling in his legs, Collapse, Brain Fog, Fractures, Mood Swings, Memory Problems, and more...
He missed so many days at school, and felt sick so often, that we finally decided it would be better for him to go back to homeschooling.
I pray every day, that he will never be permanently dependent on a wheel chair, due to chronic pain and dislocations, but he has already had to use one many times, and we keep one in our vehicle, for emergencies. The only problem is, we have no wheel chair ramp, and when he injures himself, I have to carry him in and out of the house!
I am a small woman, and he is a growing boy! So whatever funds are left over, after Johnny's BIG WISH is fulfilled (if any), will go toward building a wheelchair ramp for our home. And if, by some miracle, there is anything left after that, I will put it in a special fund so that we can continue to do fun things with him, and offer him educational experiences that will enrich his life and help him see how big the world is, and how much love is out there, just waiting for him.
I know there are so many people in need, all over the world, and I am so reluctant to ask... but my friends have spoken! And I will listen to their loving council. "Let people help you-people want to help you!", is what they've told me, so here I am, holding out hope that they are right!
Thank you from the bottom of my heart, for making me feel less alone. For giving me hope. For offering my son a chance to experience joy. And for caring enough to read this, very long, post!
Sincerely,
Johnny Awesome's Mommy.
PS. Johnny's Birthday is coming up. He will be 10. Maybe, just maybe, we can make this the best birthday gift ever?! :D
Organizer
Jennifer M. York
Organizer
Farmington, NH
