Aarons Medical Needs
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Thank you for viewing our page . I'm trying to get the word out on our little fighter's story to hopefully receive some much needed support through prayer and monetary donations when possible. Our Son, Aaron Mason, was born at 2lbs, 12oz on July 10, 2017 alongside his twin brother Samuel and was in the NICU for 100 days due to many complications. While Samuel has thankfully thrived, Aaron has endured many setbacks.
Our fighter had a brain bleed at birth which led to a condition called Cystic Prevetricular Leukomalacia (partial brain loss), has been diagnosed with Necrotizing Entercolitis (had his colon removed at 2 weeks old via emergency surgery) giving him an iliostomy for some time, global developmental delay (developmentally a 3-5 month old), cortical visual impairment (neurological blindness that can improve with consistent therapy), spastic diplegic cerebral palsy and a rare, debilitating form of epilepsy called infantile spasms (IS). All of these diagnoses have resulted in a plateau of progress over the last 6 months.
He has been hospitalized many times since birth and most recently for his epilepsy diagnosis that we are currently treating with steroid injections that make him very irritable. Each hospital stay gets tougher for us, not easier because it's grown disheartening to see our boy in life-threatening situations again and again. It seems like right when we are finally in a "good-stretch" for a month, he regresses and a new diagnosis emerges. Emotionally, we are drained. Our sweet boy is 15 months now and he has yet to be able to independently hold his head up, sit up, roll over or independently support himself in any way. It's hard to see your child lay around the majority of the day unless he's being supported in your arms. His visual impairment may possibly be the toughest challenge because he never looks AT us or makes eye contact. He doesn't reach or hold toys except in very controlled environments. This has placed an incredible amount of stress on our new family and many days are filled with seemingly unrealistic tasks. With Zac working full time, my working remotely and taking care of the boys, advocating daily for Aaron and running to countless specialist appointments with twin babies, it's difficult to stay positive and hopeful...we are struggling. But we aren't giving up. Aaron is in weekly therapies to see how far he can go; and we believe he will do great things in the future. Have I mentioned that unless he's in pain, he's incredibly happy? His smile seriously lights up an entire room and blesses us beyond belief. Oh, and his laugh? Even better.
Our monetary goal is to be able to afford Aaron's medical equipment and keep up with his pressing hospital stay bills. Our insurance denies coverage for his equipment.
Gait trainer to help him walk - $1500
Helmet for his flat head - $2400 (purchased but needs paid off)
Trunk brace to support low muscle tone - $200 Supportive bath chair - $400-$500
Leg orthotics - waiting on estimate
Special supportive stroller - $5,000
Past due bill amount - $5200
Our goal is to save enough to purchase these out of pocket or at least afford monthly payment plans and keep our medical bills out of collections.
Sharing our story/link is greatly appreciated because every prayer and every dollar (literally) blesses our family and lessens a daily, overwhelming stressor. I'm not the best with social media so if you personally have any ideas on how to better share our story, please let me know <3
You are loved, and we are thankful you took the time to read our precious boy's story.
Zac, Amanda, Aaron and Samuel 
Our fighter had a brain bleed at birth which led to a condition called Cystic Prevetricular Leukomalacia (partial brain loss), has been diagnosed with Necrotizing Entercolitis (had his colon removed at 2 weeks old via emergency surgery) giving him an iliostomy for some time, global developmental delay (developmentally a 3-5 month old), cortical visual impairment (neurological blindness that can improve with consistent therapy), spastic diplegic cerebral palsy and a rare, debilitating form of epilepsy called infantile spasms (IS). All of these diagnoses have resulted in a plateau of progress over the last 6 months.
He has been hospitalized many times since birth and most recently for his epilepsy diagnosis that we are currently treating with steroid injections that make him very irritable. Each hospital stay gets tougher for us, not easier because it's grown disheartening to see our boy in life-threatening situations again and again. It seems like right when we are finally in a "good-stretch" for a month, he regresses and a new diagnosis emerges. Emotionally, we are drained. Our sweet boy is 15 months now and he has yet to be able to independently hold his head up, sit up, roll over or independently support himself in any way. It's hard to see your child lay around the majority of the day unless he's being supported in your arms. His visual impairment may possibly be the toughest challenge because he never looks AT us or makes eye contact. He doesn't reach or hold toys except in very controlled environments. This has placed an incredible amount of stress on our new family and many days are filled with seemingly unrealistic tasks. With Zac working full time, my working remotely and taking care of the boys, advocating daily for Aaron and running to countless specialist appointments with twin babies, it's difficult to stay positive and hopeful...we are struggling. But we aren't giving up. Aaron is in weekly therapies to see how far he can go; and we believe he will do great things in the future. Have I mentioned that unless he's in pain, he's incredibly happy? His smile seriously lights up an entire room and blesses us beyond belief. Oh, and his laugh? Even better.
Our monetary goal is to be able to afford Aaron's medical equipment and keep up with his pressing hospital stay bills. Our insurance denies coverage for his equipment.
Gait trainer to help him walk - $1500
Helmet for his flat head - $2400 (purchased but needs paid off)
Trunk brace to support low muscle tone - $200 Supportive bath chair - $400-$500
Leg orthotics - waiting on estimate
Special supportive stroller - $5,000
Past due bill amount - $5200
Our goal is to save enough to purchase these out of pocket or at least afford monthly payment plans and keep our medical bills out of collections.
Sharing our story/link is greatly appreciated because every prayer and every dollar (literally) blesses our family and lessens a daily, overwhelming stressor. I'm not the best with social media so if you personally have any ideas on how to better share our story, please let me know <3
You are loved, and we are thankful you took the time to read our precious boy's story.
Zac, Amanda, Aaron and Samuel 
Organizer
Amanda Goss
Organizer
Austell, GA
