Nov 13, 2011

Our Miracle Child and the Dilemma

Hi everyone,

First, thank you all for stopping by to check out Team Losh and the fundraiser and to offer your support. As most of you know, my nephew, Aloshua is my family's miracle child, and I don't use that term lightly.

Aloshua and his brother, Kaia, in 2008.

Aloshua (Losh) was born at 27 weeks gestation with severe medical problems. In addition to those that come with a premature birth like his, Aloshua has an Arnold Chiari Malformation (a malformation of his brain stem), spina bifida, hydrocephalus, a partially paralyzed diaphragam, chronic lung disease, a coloboma (malformation of the eye), and a genetic disorder that his geneticist is still trying to pinpoint.

Our family did not know any of this before Aloshua was born. In fact, no one even realized he had spina bifida until the morning after he was born. He was so critical that his neonatal team missed the open hole in his back for twelve hours.

In the six years since his early birth, he has undergone nineteen different surgeries, and has coded several times. He requires the use of a ventilator every night, is cathed every four hours because of issues related to the spina bifida, undergoes physical, occupational and speech therapy four days a week, requires chest physio-therapy every four hours, has a trach, and walks with the aid of a walker and leg braces (AFOs and KAFOs).  He's spent three cumulative years in the hospital, with some stays lasting months at a time, and didn't say his first words until he was four years old. He was five before his mom ever heard him say "I love you".

Despite the serious health obstacles he faces, our family has been blessed. It wasn't that many years ago that children like Aloshua had an incredibly low chance of survival (less than 5 percent). Thanks to advancements in medical technology, however, children like him are now not only surviving but are thriving.

Aloshua lives at home with his mother, his older brother, and his little sister. He is homeschooled, and is able to do normal little boy things like visit the Zoo or go swimming (with assistance, of course). This summer, Aloshua experienced a skating rink for the first time. Last year, Make-a-Wish sent him to Disney where he got to meet Mickey Mouse (who is his hero), visit the beach and spend time with his family in a setting he might otherwise never have gotten to experience. Aloshua is able to crawl, and to get around in a wheelchair designed specifically for his diminutive size. He is able to eat most of the foods you and I eat, watch television, play tee-ball in his wheelchair, and otherwise experience a normal childhood to the greatest extent possible. He loves to sit on the cabinet with his mom and "wash" dishes, make us art projects, go fishing with his grandpa, attend story-time at the local library, and play educational games on his grandma's laptop or games on his brother's X-Box.

He knows how to work his ventilator and suction machine, helps his mom give him G-Tube feedings and his medication, and is always the first to remind you that he has to put on his face mask and trach "nose" (a filter for his trach) when he goes out in public. He is a normal little boy who just so happens to come with a lot of equipment and medical needs. He is, as I said, our miracle child.

It is not an easy road for him or for children like him though. In addition to the intensive treatments these children require every day, often for their entire lives, these children often require in-home nursing care, and are faced with inadequate insurance guidelines, a lack of adequate medical treatment, and a lack of necessary resources.

In our state, for instance, there is only one hospital that is equipped to deal with a kid like Aloshua: Arkansas Children's Hospital. Families with children like him are faced with long trips to the hospital, (sometimes as much as five and six hour long trips) for doctors appointments and check-ups. Because medical personnel at local hospitals are not trained to deal with these children, do not have the equipment to treat these children, and often are too afraid to even attempt basic stablization, a medical emergency for these children can be a death sentence.

Inadequate insurance guidelines leave these children and their families footing the bill for life-saving medical expenses that are by no means easily covered. Aloshua's first two days of life came with an $80,000.00 hospital bill. His first year of life came with a nearly $1 million dollar bill. When doctors appointments, therapy and hospitalizations are excluded, his medical expenses every month total as much as $15,000.00. And he is not the only child with similar expenses. In Arkansas, there are nearly 400 patients like Aloshua who face these same expenses and obstacles every day.

Many of these families have joined together to help one another out by collecting the supplies that insurance companies do not pay for and distributing them to one another. For instance, insurance may only pay for one trach every six months in Arkansas and an unlimited supply of suction caths, but insurance in Nebraska may provide 1 trach every month and only 30 suction caths. So these families work together and send one another excess supplies to help alleviate the costs left behind by inadequate insurance guidelines. It reduces some of the burden, but these families are still left with thousands of dollars in expenses.

And that is why we're here today. Aloshua's mom is facing nearly $20,000.00 in necessary expenses at the moment and needs our help to ease that burden and ensure that Losh is able to receive the treatment he needs until his doctors can get through the red-tape and get his insurance provider to pick up the tab. In that vein, we've started a Team Losh Fund to help her raise the funds to cover those expenses between now and January 15th, 2012.

So what are we raising money for and how much?

$9,000.00 for a two month supply of Tobi, an inhalation antibiotic used to treat a potentially fatal pseudomona infection in his lungs.
$5,609.19 for an IPV (intrapulmonary percussive ventilation) system used to deliver inhalation medication directly to his lungs and break up mucus to keep his airways clear.
$3,500.00 to get Aloshua's van repaired. A rod in the engine has broken and his family is currently living 60 miles from the hospital with no consistent mode of transportation to and from appointments and therapy.

It's a lot of money, and unfortunately, it is all necessary to ensure that Aloshua can continue to thrive.

Let me be clear: we're not asking any of this of you lightly. For six years, his mom and our family has picked up the monthly tab on his out of pocket expenses without assistance. Unfortunately, we simply cannot come up with $18,000.00 on our own at the moment, and Aloshua is wait-listed for the programs that will help cover these expenses (such as the Medicaid Waiver program). His medical team is trying to get patient assistance approved for the Tobi, but at this point, it doesn't look like they will be successful before his next cycle begins. So we're turning to all of you for help.

And we're not asking for something for nothing. Not by any means. We want to ensure that those who donate are given something back, so we will be delivering a fandom compilation to donors, selling Team Losh gear, and raffling off prizes to donors as well.

If you would like to sign up to write a story for the compilation, to donate a prize, to design an item for the store, or to help in any other way, you will find the information you need on here on the blog. You will also find information about Aloshua and, as the fundraiser progresses, ways you can advocate for and help other children like him.

I encourage you to check it out and to email me with any questions or suggestions you might have.

And thank you, all of you, for taking a moment to visit, to donate or to volunteer. It means more to my family than we could ever say.

All my love, 

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