Ailyns Army and Rogers' Family

Welcome everyone! I created this page to support my friend Alexa Rogers and her medically complex daughter. Ailyn is a sweet 5 year old born with Severe congenital heart defects, along with extensive medical, behavioral and physical complexities in which she requires a high level of care.

Ailyn is a 5yo with a rare genetic disease, born with severe heart defects, kidney issues, spinal issues, cognitive delays, severe autism & more. Ailyn will have her 4th open heart surgery soon to fix her aortic valve & arch.

In 2018, the Rogers' Family learned they were going to welcome their 5th child. While Alexa was pregnant with Ailyn, they discovered Ailyn had multiple congenital heart defects; the largest being that she had essentially no aorta (or hypoplastic aortic arch, aortic valve and transverse aorta). Ailyn was born in Sept of 2018 and spent over six months in the CICU at Children's Hospital of WI. She underwent 2 open heart surgeries, multiple trips to the Cath lab, countless procedures, endured septic infections, many complications and was finally stable enough to go home at 6.5 months old. While in the hospital, the geneticists learned that Ailyn had a rare genetic disease in which her 1st, 11th and 15th chromosomes were all missing genes. This is the cause of her heart defects, cognitive delays and host of other medical complexities such as spinal/skelatal abnormalities, renal/bladder issues, neurological issues, ear and eye abnormalities, skin issues and more. As she grows larger, more medical, behavioral or cognitive abnormalities present themselves with each passing month. Since her genetic abnormalities are so rare and the doctors have no other medical data to compare Ailyns genetic deletions to; Ailyn's first geneticist told Jeff and Alexa that she is not sure if Ailyn will live "2 weeks, 2 months, 2 years or 2 decades". While Ailyn has proven that doctor wrong and is now 5 years old, her parents have been told by other specialists that the odds of Ailyn reaching adulthood aren't great.

Ailyn's heart will never be "cured". Severe Congenital Heart Defects, such as the one Ailyn was born with, are lifelong battles. There is no remission and there is no "CHD Free". This is a battle Ailyn will always face. Ailyn had her 3rd open heart surgery in 2020 and subsequent visits to the Cath lab since. In the fall of 2023, Ailyn had an angioplasty done to correct her aortic stenosis. The procedure was successful, however, it did not decrease the aortic valve leakage they hoped it would. In Dec of 2023, Ailyn had an echocardiogram done which showed the leakage was now severe. A large percentage of the blood that her aortic valve is trying to pump out to her body was leaking back into her left ventricle, in turn, reducing the amount of blood being profused to her body and organs. Because of this, Ailyn will have to undergo her 4th open heart surgery soon. As of right now, her heart muscle is not being compromised by the leakage, and her cardiologist would like to give Ailyn as much time to grow as possible to be able to put a larger donor valve. So they are keeping watch on her heart to ensure it is not being stressed by the leakage. Once there are signs of her not tolerating that aortic leak, they will proceed with her 4th open heart surgery. Ailyn is being granted a wish from "Make a Wish" and they are hoping to be able to grant her wish prior to her needing surgery.

Currently, Ailyn at home with her parents and 5 siblings. She is gtube dependent, unable to walk, non-verbal, and has significant cognitive/developmental delays. She is the size and has the strength of a typical 5yo; however, her cognitive development is comparable to that of a 9 month old. In 2023, Ailyn's team of physicians at Children's Hospital of WI officially diagnosed her with severe autism. Ailyn "stims" by harming herself (banging her head on the floor, biting, poking her eye's, etc) when she is overwhelmed, upset or when something is "off". In turn, one of her parents is always by her side to ensure her safety. This has resulted in financial challenges for the Rogers' Family. It has been incredibly difficult to balance a full time job, or in Alexa's case, run her own business, while also being Ailyn's caregiver and getting her to/coordinating all of her therapies (physical, occupational, speech and ABA for Autism), dr appts, procedures, tests/study's and meetings w/ her team. Unfortunately, Wisconsin is not a state that offers IHSS (In Home Support System) program for parents of disabled children be paid to be their child's caregiver.

I created this fundraiser to help Ailyn's family financially. There are a few items that Alexa's has mentioned to me that I would like to raise money for, as I feel they would be beneficial to Ailyn and to The Rogers' Family on many levels. I would like to help them purchase a "Cubby Bed" for Ailyn. Ailyn currently sleeps in a crib in Jeff and Alexa's room so that when she gets frustrated and tries to hurt herself by banging her head on the crib, they can quickly stop her. The cubby bed I would like to fundraise for is padded and is specifically created for children who "stim" such as Ailyn does. These beds are around $4k. Despite it being recommended by her physicians and care team, insurance deems it "restrictive" and won't cover it. This will hopefully allow Alexa and Jeff to get a bit more sleep knowing Ailyn is sleeping in a safe bed that she can't hurt herself in. In addition, I would like to raise money to create a space in The Rogers' home specifically designed for Ailyn, with her safety, sensory system, and her special needs in mind. This space will be equipped with therapy equipment and sensory tools to aid her development, in addition to being completely safe and accessible for Ailyn and her wheelchair. In order to do this, they would need to hire a contractor to either convert their garage into a therapy/sensory room or they would need to add a room onto their home to create this sensory safe space. Right now, their living room is used for this with various mats, therapy equipment such as a swing, trampoline, tomato chair, crash pad, compression canoe, sensory toys and much more. By creating a therapy space for Ailyn, they will be able to use their living room to do things together as a family once again (such as movies, board games or just relaxing together)

Living with a rare genetic disease, CHD, severe autism and being this medically complex presents unique obstacles and challenges for both Ailyn and her family! With your help, we can empower Ailyn to thrive and provide her with a safe space needed to do so. In addition, we can help the Rogers' Family focus on being a family and not worry as much about finances as they prepare for Ailyn's upcoming open heart surgery. Your generosity will make a difference in their lives!

Join us in making a difference in Ailyn’s life. Your support will not only benefit her, but also serve as a beacon of hope for families facing similar challenges. Alexa's hope is to one day turn "Ailyn's Army" into a foundation to help medically complex children and their siblings/families, as CHD and genetically rare diseases are never fought alone. Together, we can provide Ailyn and her family with the help and care they deserve. Thank you for your kindness and compassion.