Life-changing Treatment for Aria Help Her Relocate
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Introducing Aria!
Hello, I am Sally Groene and I live with my husband, Scott, in Van Buren, Maine. Please allow me to introduce our beautiful, bright, and strong-willed granddaughter, Aria. Aria was born via c-section on September 27, 2019. Aria has Arthrogryposis Multiplex Congenita (AMC), a muscle disorder that causes multiple joint contractures at birth. Aria’s AMC affects her wrists and ankles and significantly limits her mobility.
Aria lives with her mommy (our daughter, Jen), and her daddy (Wynn) in Bangor, ME. We knew about Aria’s condition prior to her birth and were told by the NICU doctor in Bangor that he had seen 2 cases of AMC in his 22 years of practice. So I’m not going to lie, the doctor’s comment caused Scott, and me great concern.
Shriners Hospital gets involved:
Fortunately, a co-worker of Scott’s is a Shriner and was able to get Aria connected with the wonderful people at Shriners Hospital for Children. The nearest Shriners Hospital is in Springfield, MA. Aria visited there once prior to the pandemic. While trying to find other AMC parents who might offer guidance or suggestions for treatment, we learned that there are 3 doctors in the eastern U.S. who specialize in the treatment of AMC patients. Two of these doctors work at Shriners Hospitals – one in Philadelphia, who has a two-year waiting list, and one in Greenville, South Carolina, who, at the time, was out on maternity leave. So Aria continued to receive her care in Bangor. Covid19 significantly altered Aria’s OT/PT for months as the care facilities were closed for a bit. When facilities reopened, Aria’s leg braces were reordered due to her growth. When a picture (of the braces with metal buckles) was shared with an AMC mom, she told our daughter that the buckle braces should not be used when treating AMC joints as they are too heavy for already impaired joints. The doctor in Bangor also suggested using Botox shots with Aria. It was at that point that we encouraged Jen to see if anything had changed regarding the ability of the two Shriners specialists to see Aria. Well, God is good all the time!
Life-changing trip to Greenville:
When Jen contacted the Shriners Hospital in Greenville, they said that the specialist had a cancellation and she could see Aria on July 27, 2020. Again, through the grace of God, and the generosity of our wonderful son and daughter-in-law in Illinois, Jen, Aria, and I flew to South Carolina. Wow. Wow. Wow. I still get teary-eyed just remembering our fabulous, Aria-centered experience with the specialist and OT/PTs at the Shriners in Greenville. Due to Covid19, only Jen and Aria were allowed in Shriners Hospital. Jen entered the elevator with Aria as a nervous, somewhat anxious mom. When I met her at the elevator several hours later, I saw a totally different Jen. She was so excited as she told me that, for the first time, she felt that the doctor was directing Aria’s care instead of Jen feeling like she had to “push for” the care. Jen said that within the first minute the doctor laid eyes on Aria, she told Jen the type of AMC that Aria had from the shape of her nose and birthmark between her eyes. I told Jen that all of the doctors would fall in love with Aria and to be sure they gave Aria back to Jen (Lol!).
Moving 1,163 miles from home:
When we left for Greenville, we really weren’t sure what the outcome would be. After two days at Shriners in South Carolina, it was quite apparent what would be best for Aria. During the visit, they made new splints for Aria’s wrists. What really impressed Jen was that they re-made the splint for one wrist three times to “get the best fit for Aria”. What certainly caught my eye was that these new splints had a molded place for Aria’s thumbs. To me, it showed that the doctors at Greenville wanted Aria to see her thumb and learn that it is an additional manipulator, and separate from her fingers. Once they move to Greenville (they are hoping to move in September 2020), the doctor plans to start casting Aria’s legs and casts will be changed weekly. This, too, is a more intense and necessary treatment than what was offered in Bangor. We feel that the discrepancies in care/treatment from Bangor are due to a lack of experience with AMC patients. Thus, it was becoming clearly obvious that the best, and realistically only, place for Aria to receive the care that she requires by a truly blessed and talented team, is in Greenville at Shriners Children’s Hospital.
Deciding to reach out:
This brings me to my decision to reach out to Go Fund Me. Currently, Jen is staying at home to care for Aria and provide the necessary OT/PT exercises that Aria needs daily. While Jen has found a work-from-home online job once they move to South Carolina, they have been making ends meet on one income from Wynn’s job at Texas Roadhouse. They would perhaps qualify for Section 8 housing, however, there is a very lengthy waiting list and Aria should have already had a minor release surgery on her right foot. Thus, it is important to make the move sooner rather than later. So moving to a new town 1,163 miles from home is a financially daunting task for Jen, Wynn, and Aria. Shriners will provide the medical care for Aria for which we will be forever grateful. However, just checking on moving expenses using a rental truck company will be more expensive than I even anticipated. The donations that are received from this Go Fund Me will be used as follows:
$1,600 for first month’s rent, and deposit ($800 & $800)
$1,400 for U-Haul truck rental one way
$500 for fuel (diesel) for the rental truck
$100 for fuel (gas) for vehicle
$400 lodging (2 nights) for travel to Greenville
Please note, should donations exceed the requested amount, they will be placed in a trust fund specifically for Aria (i.e. college fund).
We can never thank you enough for considering making a donation so that our smart, precious, and determined granddaughter, Aria, can receive expert medical care for her debilitating condition. Only the experts have the know-how to help Aria walk and become as self-sufficient as possible.
Hello, I am Sally Groene and I live with my husband, Scott, in Van Buren, Maine. Please allow me to introduce our beautiful, bright, and strong-willed granddaughter, Aria. Aria was born via c-section on September 27, 2019. Aria has Arthrogryposis Multiplex Congenita (AMC), a muscle disorder that causes multiple joint contractures at birth. Aria’s AMC affects her wrists and ankles and significantly limits her mobility.
Aria lives with her mommy (our daughter, Jen), and her daddy (Wynn) in Bangor, ME. We knew about Aria’s condition prior to her birth and were told by the NICU doctor in Bangor that he had seen 2 cases of AMC in his 22 years of practice. So I’m not going to lie, the doctor’s comment caused Scott, and me great concern.
Shriners Hospital gets involved:
Fortunately, a co-worker of Scott’s is a Shriner and was able to get Aria connected with the wonderful people at Shriners Hospital for Children. The nearest Shriners Hospital is in Springfield, MA. Aria visited there once prior to the pandemic. While trying to find other AMC parents who might offer guidance or suggestions for treatment, we learned that there are 3 doctors in the eastern U.S. who specialize in the treatment of AMC patients. Two of these doctors work at Shriners Hospitals – one in Philadelphia, who has a two-year waiting list, and one in Greenville, South Carolina, who, at the time, was out on maternity leave. So Aria continued to receive her care in Bangor. Covid19 significantly altered Aria’s OT/PT for months as the care facilities were closed for a bit. When facilities reopened, Aria’s leg braces were reordered due to her growth. When a picture (of the braces with metal buckles) was shared with an AMC mom, she told our daughter that the buckle braces should not be used when treating AMC joints as they are too heavy for already impaired joints. The doctor in Bangor also suggested using Botox shots with Aria. It was at that point that we encouraged Jen to see if anything had changed regarding the ability of the two Shriners specialists to see Aria. Well, God is good all the time!
Life-changing trip to Greenville:
When Jen contacted the Shriners Hospital in Greenville, they said that the specialist had a cancellation and she could see Aria on July 27, 2020. Again, through the grace of God, and the generosity of our wonderful son and daughter-in-law in Illinois, Jen, Aria, and I flew to South Carolina. Wow. Wow. Wow. I still get teary-eyed just remembering our fabulous, Aria-centered experience with the specialist and OT/PTs at the Shriners in Greenville. Due to Covid19, only Jen and Aria were allowed in Shriners Hospital. Jen entered the elevator with Aria as a nervous, somewhat anxious mom. When I met her at the elevator several hours later, I saw a totally different Jen. She was so excited as she told me that, for the first time, she felt that the doctor was directing Aria’s care instead of Jen feeling like she had to “push for” the care. Jen said that within the first minute the doctor laid eyes on Aria, she told Jen the type of AMC that Aria had from the shape of her nose and birthmark between her eyes. I told Jen that all of the doctors would fall in love with Aria and to be sure they gave Aria back to Jen (Lol!).
Moving 1,163 miles from home:
When we left for Greenville, we really weren’t sure what the outcome would be. After two days at Shriners in South Carolina, it was quite apparent what would be best for Aria. During the visit, they made new splints for Aria’s wrists. What really impressed Jen was that they re-made the splint for one wrist three times to “get the best fit for Aria”. What certainly caught my eye was that these new splints had a molded place for Aria’s thumbs. To me, it showed that the doctors at Greenville wanted Aria to see her thumb and learn that it is an additional manipulator, and separate from her fingers. Once they move to Greenville (they are hoping to move in September 2020), the doctor plans to start casting Aria’s legs and casts will be changed weekly. This, too, is a more intense and necessary treatment than what was offered in Bangor. We feel that the discrepancies in care/treatment from Bangor are due to a lack of experience with AMC patients. Thus, it was becoming clearly obvious that the best, and realistically only, place for Aria to receive the care that she requires by a truly blessed and talented team, is in Greenville at Shriners Children’s Hospital.
Deciding to reach out:
This brings me to my decision to reach out to Go Fund Me. Currently, Jen is staying at home to care for Aria and provide the necessary OT/PT exercises that Aria needs daily. While Jen has found a work-from-home online job once they move to South Carolina, they have been making ends meet on one income from Wynn’s job at Texas Roadhouse. They would perhaps qualify for Section 8 housing, however, there is a very lengthy waiting list and Aria should have already had a minor release surgery on her right foot. Thus, it is important to make the move sooner rather than later. So moving to a new town 1,163 miles from home is a financially daunting task for Jen, Wynn, and Aria. Shriners will provide the medical care for Aria for which we will be forever grateful. However, just checking on moving expenses using a rental truck company will be more expensive than I even anticipated. The donations that are received from this Go Fund Me will be used as follows:
$1,600 for first month’s rent, and deposit ($800 & $800)
$1,400 for U-Haul truck rental one way
$500 for fuel (diesel) for the rental truck
$100 for fuel (gas) for vehicle
$400 lodging (2 nights) for travel to Greenville
Please note, should donations exceed the requested amount, they will be placed in a trust fund specifically for Aria (i.e. college fund).
We can never thank you enough for considering making a donation so that our smart, precious, and determined granddaughter, Aria, can receive expert medical care for her debilitating condition. Only the experts have the know-how to help Aria walk and become as self-sufficient as possible.
Organizer
Sally Groene
Organizer
Van Buren, ME