Fight for Aaron!
Donation protected
Hey #AaronsArmy ☺️
Day +2503 post transplant (can you believe that )
If you’ve been following Aaron’s story since the beginning, it may shock you to know that his bone marrow transplant was almost 7 years ago and thank the lord, the last seven years have only come with some small hurdles and close yearly follow ups with his special team of MPS doctors in Minnesota. Aaron is 8 years old now and the happiest, silliest, spunkiest, most A C T I V E boy you will ever meet. If you’re new to Aarons story, the short version is that he is my nephew and has a genetic disorder called Hurlers Syndrome or MPS 1. It’s categorized as a storage disorder that affects all of your organs, your skeletal system and your brain and left untreated, is ultimately fatal within the first 5 years of life. Aaron has had 2 transplants, one failed cord blood transplant and one successful bone marrow transplant. Aarons uncle Anthony was the final donor of the golden bone marrow that saved the day those 2,503 days ago and Aaron has been able to live like a normal crazy little boy since then
While there is no “cure” for MPS now, there have been loads of medical advancements and the treatment with successful gene therapy is a real possibility in Aarons lifetime. But until then my sister Angela and the team of doctors at U of M and in Minnesota have been managing symptoms as the come and planning for the future.
Well the future is here, and so is our next big challenge as #AaronsArmy. Because of his bone formation being different due to MPS, Aaron is going to need major reconstructive surgery to both of his hip joints this summer They will be flying out to Minnesota in June and will remain there for his surgery and the following weeks over the summer as he begins his road to recovery. Our sweet active boy has been in increasing amounts of pain by the end of each day over the last year and the hope is that by restructuring his hip joints, it will alleviate the pain and discomfort he has. He will be non-weight bearing for the 6 weeks after surgery and if you know Aaron at all, you know this will be the biggest challenge.
During this time Angela will obviously also be off of work. So, you guessed it! It’s fundraiser time!!! Aaron l o v e s bowling and we want to help raise some money to support Ange and Aaron over the summer, as well as to send him off with a fun party! At the fundraiser, there will be bowling, prizes, and a bone marrow drive! So if you haven’t had the chance to get yourself on the national bone marrow registry yet, I’ll be able to help you sign up! More info will come as the event approaches, but put it on your calendars for June 1st, and you can message or call me with any questions!
We’ve had loads of questions on how to help if you’re not local to Aaron in Michigan, or are unable to attend the event for a different reason. So this Go Fund Me will be the other avenue to make an impact for my sister and nephew this summer! Medical costs, transportation, bills, groceries, and fun stuff to occupy an active 8 year old who will be in a wheelchair for the summer, all come at a steep cost, and I know they will be so grateful for every last dollar donated <3
Day +2503 post transplant (can you believe that )
If you’ve been following Aaron’s story since the beginning, it may shock you to know that his bone marrow transplant was almost 7 years ago and thank the lord, the last seven years have only come with some small hurdles and close yearly follow ups with his special team of MPS doctors in Minnesota. Aaron is 8 years old now and the happiest, silliest, spunkiest, most A C T I V E boy you will ever meet. If you’re new to Aarons story, the short version is that he is my nephew and has a genetic disorder called Hurlers Syndrome or MPS 1. It’s categorized as a storage disorder that affects all of your organs, your skeletal system and your brain and left untreated, is ultimately fatal within the first 5 years of life. Aaron has had 2 transplants, one failed cord blood transplant and one successful bone marrow transplant. Aarons uncle Anthony was the final donor of the golden bone marrow that saved the day those 2,503 days ago and Aaron has been able to live like a normal crazy little boy since then
While there is no “cure” for MPS now, there have been loads of medical advancements and the treatment with successful gene therapy is a real possibility in Aarons lifetime. But until then my sister Angela and the team of doctors at U of M and in Minnesota have been managing symptoms as the come and planning for the future.
Well the future is here, and so is our next big challenge as #AaronsArmy. Because of his bone formation being different due to MPS, Aaron is going to need major reconstructive surgery to both of his hip joints this summer They will be flying out to Minnesota in June and will remain there for his surgery and the following weeks over the summer as he begins his road to recovery. Our sweet active boy has been in increasing amounts of pain by the end of each day over the last year and the hope is that by restructuring his hip joints, it will alleviate the pain and discomfort he has. He will be non-weight bearing for the 6 weeks after surgery and if you know Aaron at all, you know this will be the biggest challenge.
During this time Angela will obviously also be off of work. So, you guessed it! It’s fundraiser time!!! Aaron l o v e s bowling and we want to help raise some money to support Ange and Aaron over the summer, as well as to send him off with a fun party! At the fundraiser, there will be bowling, prizes, and a bone marrow drive! So if you haven’t had the chance to get yourself on the national bone marrow registry yet, I’ll be able to help you sign up! More info will come as the event approaches, but put it on your calendars for June 1st, and you can message or call me with any questions!
We’ve had loads of questions on how to help if you’re not local to Aaron in Michigan, or are unable to attend the event for a different reason. So this Go Fund Me will be the other avenue to make an impact for my sister and nephew this summer! Medical costs, transportation, bills, groceries, and fun stuff to occupy an active 8 year old who will be in a wheelchair for the summer, all come at a steep cost, and I know they will be so grateful for every last dollar donated <3
Fundraising team: Team fundraiser (4)
Amber Stinson
Organizer
Livonia, MI
Angela Sharp
Beneficiary
Annette Sharp
Team member
Anthony Sharp
Team member