The only approved treatment for pseudomonas like this is an inhalation antibiotic that must be given in continual 28-day cycles. That is to say, Aloshua takes the antibiotic for 28-days, then stops for 28-days, and then begins another 28-day cycle. Aloshua may very well be on the antibiotic for years, and because the antibiotic is so expensive, his insurance provider only covers it for patients with cystic fibrosis, leaving his mom facing a $4,500.00 bill for one medication every other month until alternative arrangements can be made or Aloshua no longer needs the medication.
Aloshua is a former 27 week preemie with chronic lung disease, an Arnold Chiari Malformation, spina bifida, and a genetic defect. He requires intensive treatments daily, must use a ventilator each night, and can walk short distances only with the aid of a walker and full leg braces. He is severely immuno-compromised: A cold for him can mean weeks in pediatric intensive care. Winter is particularly difficult for him because of the flu, RSV and pneumonia. It’s vital that we get him enough of the medication, as well as a new IPV machine (to break up "junk" in his lungs by delivering medication directly into his lungs through percussions), to last until his doctors are able to get an insurance waiver approved (or until Novartis is able to supply the medication as part of a patient assistance program) so he has no setbacks during the flu and RSV season.
In addition to this expense, the van used to transport Losh back and forth to Children's for doctors' appointments and to his therapy sessions four days a week is in need of repair. A rod in the engine broke, and it's going to cost a small fortune to get it repaired or to get Aloshua into a new wheelchair accessible van. Aloshua lives sixty miles from Children’s and his local hospital is not equipped to treat him in an emergency such as happened in September, so we really need to get him into a new van quickly.
Team Losh would like to help ensure Aloshua receives the medication and equipment he needs, as well as ensure that he has transportation to and from the hospital and therapy, but we need your help to do it. Two cycles of the medication is $9,000.00 (without applicable taxes). The IPV machine he needs to replace his broken machine is $5,609.19. The van repairs were assessed by a local mechanic at $3,500.00. All told, we need to raise close to $18,000.00. It's a daunting task, particularly for a single mother with a child like Losh.
Please join Aloshua's family and friends and help support this amazing little boy and his family in their time of need by donating to his medical fund at: http://giveforward.com/teamlosh or at First Community Bank in Bald Knob, AR. All proceeds will go toward his medical expenses, and donors will be entered into drawings for prizes both big and small.
Please see this page for a complete list of prizes being raffled off.
Want to help in another way?
Raffle Prizes:
If you would like to donate a prize to be raffled off to donors, please contact us at teamlosh@gmail.com. We're accepting prizes big and small such as handmade items, gift cards, services, autographed items, etc.
The Store:
You can also show your support for Aloshua by purchasing “Team Losh” gear at: http://zazzle.com/loshie. All proceeds go to Aloshua's medical fund.
Compilation:
Those who donate at least $5.00 will receive an electronic compilation (an "ebook" anthology) of short stories and one-shots put together by participating authors and fanfiction writers. To participate: make your donation to the Team Losh Fundraiser at http://giveforward.com/teamlosh anytime between now and February 15th, 2012 and then forward your receipt (please remove confidential information such as the last 4 digits of your CC number before forwarding) to teamlosh@gmail.com. The compilation will be sent out to participants starting January 31st, 2012.
Authors may sign up to write a piece by clicking on the Author Sign-Up link here on the blog.
Wish List:
If you or your organization would like to donate an IPV (intrapulmonary percussive ventilation) system to Aloshua, please email us at teamlosh@gmail.com.
Notice:
If alternative arrangements can be made for part or all of the listed expenses, all funds collected toward those expenses will be donated to the Arkansas Center for Respiratory Technology Dependent Children (who work with children like Aloshua), to be earmarked specifically for medication, equipment and treatment expenses for respiratory technology dependent children in need.
