$18,955 of $20,000
157 donations

This fundraiser ended on 12/15/11

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Do you remember Moana? Well, she's still here. Maybe not on Facebook, or on the phone, but she's here, and she needs us. Please read.

Krista: Do you know the Kukowski family? I remember Kane, the youngest of three, a tiny little guy with beautiful auburn hair. Moana and I used to play Hungry Hippos with him. He’s gone on to a career in the military, heroically serving our country. I no longer envy his hair. He’s also no longer a little guy. There was Nadia, the middle child. She was always in our business, as younger sisters can be. She demanded our attention, wanting to be a big girl with us. She grew into a beautiful woman, with two children of her own. There was Moana. She was one of my best friends: full of desire to solve mysteries, exuding impressive athletic skills, and possessing a serious amount of camouflaged silliness - surprising you when you least expected it. She’s not a mom, a military career person, a detective, a runner or a stand-up comedian. She never had the chance. Moana had just finished studying environmental science when her life and the lives of her family drastically changed.

Nadia: While riding her bike to work, Moana was hit by a car that was going too fast. The lady who hit Moana slammed on her brakes but still managed to hit Moana’s back tire causing her to fly 15 feet into the air, landing head first on the windshield. Moana was not wearing a helmet. This accident occurred 15 years ago when helmets were just starting to be used for bicycling. We nearly lost her that night, but she pulled through. Unfortunately, over the next 48 hours an infection set in and caused terrible damage to her brain.
She went through numerous brain surgeries those first few years. It was extremely taxing on Moana and my family. My parents have had her in physical and speech therapy from the beginning of the recovery process. They have researched and discovered the best therapies for Moana, but they are all out of pocket. They moved to Florida for specific therapies about ten years ago. Moana was in a hyperbaric oxygen chambers twice a week for months, costing them $200.00 a session. It was the most beneficial therapy for Moana: she was beginning to smile and respond to us like with no other therapy! Unfortunately, my parents could not continue this treatment because of the mounting expenses (they did continue other less costly therapies). Eventually they discovered a therapy called Advanced Bio-Mechanical Rehabilitation (ABR). For a few years they traveled with Moana to Montreal, Canada every few months to receive this treatment. They could see that financially they would not be able to keep that up so my mom learned how to administer the therapy herself. She trained for it every time they visited the ABR center. For the past five years my mom has been treating Moana from home.
Moana has been at home with my parents for the last ten years, their goal from the moment they moved to Florida. They want Moana at home because the facilities that would accept Moana’s state insurance are less than desirable. The patients are left in bed and develop bed sores. Their muscles affix due to lack of use, and the list goes on. As anyone would want to do for their child, my mom brought Moana home to personally care for her.
Moana gets minimal help from the state. Sometimes there is an aide that comes for an hour in the morning and an hour in the evening. Often the aides do not show up, which leaves my mom with no help or break.
A typical day for my mom and sister starts at 5:30 a.m. when Moana is given vitamins and water through her feeding tube. Her meals are spread out because it takes a long time to digest using the feeding tube. If she gets too much too fast it will come back up. They rest until 7:30 a.m. The day begins with a changing and washing up. She is then given a bit more food and my mom gets her into the wheelchair.
She is completely dependent on my mom to move for her.
My mom spends about an hour in the morning doing the ABR therapy on her. They had a therapy room with mats and other therapy tools. After therapy she is given lunch over a two hour period, followed by a little time to digest and then back to the therapy. A few hours later she is placed on a CHI machine which brings oxygen to her brain. Oxygen to the brain is what Moana needs desperately. She is on the machine for 30 minutes to an hour, giving my mom time to clean up and take care of things. By 5:00 Moana is going back to bed for washing up, changing and some relaxation. She is given dinner from 7:00 p.m. to 10:00 p.m. and her last water is given at 11:00.
My mom is up every few hours through the night. She repositions Moana to prevent bed sores and cramps.
It is a very tiring dedication.
Throughout the day my Dad is helping here and there between doing all the grocery and supply shopping. He also runs a small business that provides grocery and bill money. He is on the go continuously.
They have dedicated their lives to Moana and it is an unbelievable show of unconditional love.

Krista: Something I remember about the Kukowski household was a sense of magic. There was always magic, and a love of nature. Helen and John are doing what I hope any of us would do for our children in such a position, and are rapidly depleting their resources. Can you imagine, worrying about all the standard bills that we can have in a life, and then realizing that the one therapy that makes your baby smile is something you can’t afford. Maybe they won’t be able to do it again. But for a brief while, they got to see that their Moana is still in there. They believe in magic. So do I. We may not raise enough to get Moana everything she needs, but maybe we can raise enough to remind the Kukowskis of how important they are to the world: parents who would stop at nothing to care for their child. Let’s give them some magic. They could really use it.
Moana, we see you. We know that you are there, and could use a bit of magic yourself. You are not forgotten.
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