My name is Madeline Holub and I am a 19 year old college student. After my dad passed away this October, my mom became the sole caregiver for my 28 year old sister who has complex medical needs. Michaela requires 24/7 assistance and my mom has to provide this while simultaneously working full time to pay for my college. My mom has spent her life fighting for our family with unbelievable strength, and now she needs help. This fundraiser will help keep my sister at home where she is safe and loved, ease the financial strain, and give my mom the support she has always given everyone else.

My entire life I’ve watched my mom care for my dad and my sister with more strength and compassion than anyone I’ve ever known. She has always fought for my family—never giving up, never afraid to have fiery conversations if that’s what it took to get my sister or father the care they needed. She has been our advocate, our protector, and our foundation. Now it’s my turn to fight for her, but I need to ask for help. My mom deserves the same support she has spent her whole life giving to others, but I am limited in what I can do. I want to help her keep what’s left of our family together after losing my dad and want to make sure she doesn’t have to face this alone. It’s a lot, I know.

My sister Michaela is 28 and has lived her entire life with an inverted duplication–deletion of chromosome 8p. She is non-verbal, non-ambulatory, NPO, and requires 24/7 total care—medications, TPN feeds, mobility, and constant supervision to stay safe. She has always lived at home, surrounded by family who know her needs and how she communicates. Then a few years into her medical journey my dad got sick.

In October, we lost my dad, Frank, after his decades long battle with End Stage Renal Disease/kidney failure and complications from a double lung and heart transplant that he received in 2019. After he had to stop working in 2012, he was the person who stayed home every day, so that aides could come to care for Michaela while Mom worked to support us. Michaela is nonverbal and legally blind, so she cannot be left alone without a family member on-site. With Dad now gone, everything has changed. My mom needs to work now more than ever, and she also lost my father's SSA money upon his death, which has made things harder for us. (He had no pension or 401k.) She’s trying to keep her job with a hybrid schedule, while my 88 year-old grandmother stays overnight at times to help care for Michaela so my mom can get a full workday in the office. This situation isn’t sustainable, and my mom has almost no accruals after running out when she was home caring for my dad on hospice in his final weeks. Hospice came in, but basically it was only her 24/7 with Dad and Michaela, two non-ambulatory, and at times, both nonverbal, family members in two hospital beds at either end of the house. I don’t know many people who could handle that on a good day, much less for days on end. But that’s what you do for family.

I’m out of state at college studying to enter the medical field, and although I help whenever I can, I can’t be home full-time. In fact I was offered a full ride at a local college but my mom wanted me to be farther away so that I could maintain a college life separate from the daily medical needs of the family. I didn’t realize the importance of that gift until this year.

Because of Michaela’s complex medical needs, she qualifies for aide services in the home, but as we live in a suburban/rural area, and we are nowhere near a bus line. This makes it hard to fill shifts even when we have the hours available. Michaela’s needs exceed those that home health aides are allowed to perform, like the IV TPN feeds each night, so my mom does all the nursing duties. She gets up when the pumps alarm and she handles each crisis like a seasoned pro. Before his final hospitalization, she was also doing all the home peritoneal dialysis for my dad each day from April onward. So she worked full time and had unpaid jobs managing the care, staff and supplies at home. All because it was better for my Dad and sister. No other reason was needed. It was better for both of them for him to get dialysis at home and not go to the center three times a week, so mom learned how to do home dialysis. Like that is something that everyone would take on when they are already doing 12 hours of TPN feeds a night with Michaela.

If Michaela was placed in a care home, she wouldn’t be able to tell us if something was wrong. Keeping her home is the safest and most loving option and has been the family goal since her needs became apparent.

We are also facing unexpected financial strain, as my Mom was just told that the small life insurance policy that my dad had is under review since it lapsed and was restored in the past and the insurance company said the review is expected to take months. So, I am starting this fundraiser to help relieve the financial pressure on my mom, to help keep Michaela safely at home, and make sure our family can stay together through this incredibly difficult time. My hope is to raise some money that contributes to my mom eventually being able to retire someday and care for Michaela full time, without the constant worry about bills. We were told that statistically Michaela should not have lived to see twenty. But now she is twenty eight because of the love and care she receives. That is a blessing that has costs as Mom tries to logistically cover her needs.

My sister is full of joy, laughter, and a huge love for puppies and babies. I never want that joy taken from her by placing her somewhere we can’t watch over her care. Keeping her home keeps her safe, and keeps my mom’s heart whole. Thank you so much for reading and for any contribution you may make. Even sharing our story means the world to us. My mom really feels for families like ours that have good insurance and make good choices and still life sends catastrophic medical issues down on two of the four family members. You can’t really plan for that and certainly don’t expect it two years into married life. But they fought together until dad passed just before their 30th anniversary. That’s a lot of years of fighting.

In case you are wondering, when my dad had his heart and bilateral lung transplant in October of 2019, there was no GoFundMe or any support of that type. My mom could have used the help, but she was too busy living with my dad in the ICU in NYC, helping me with 8th grade homework over FaceTime and trying to keep Michaela covered and the household running all from his hospital room for months. So our financial situation may have been different now had this been done earlier, but my mom just tried to deal with it as she could, on her own and without my Dad really knowing what our financial situation was. He couldn’t help, so she didn’t see any reason to stress him out needlessly when he was literally fighting for his life. So, thanks for any support you can show her now. (We just didn’t want you to wonder if we were taking advantage of the kindness of strangers.)

Health & Happiness!