To Help A Boy
Close your eyes.
No, seriously close your eyes.
Now take a deep breath and keep them closed.
I want you to picture yourself, wait. Keep them closed, I'm not finished.
I want you to picture yourself pregnant, round with child and incredibly happy about your little one coming into the world.
I want you to picture being excited for the birth, smiling, grinning and overjoyed for the healthy baby moving inside you.
Now I want you to imagine giving what you thought to be a healthy birth, only to find out there is complications.
It's a word many families dread, fear, and despise when it comes to the health of newborn infants and small children alike.
So many things in this world that can complicate a little ones health, but with today's technology, we have the opportunity to save millions of lives.
However, with everything there comes a price and I'm asking you to open your heart and mind to the story of a young boy who was brought to my attention by chance, from a tweet on my twitter page.
On May 18, 2005, Aloshua (Losh) was born three and a half months premature. His family had been through a premature birth before and thought they were prepared for the battle to come, but the simple truth is that you just can't prepare for a special child like Aloshua.
Aloshua's first hours of life were so critical that it was nearly twelve hours later before anyone on his neonatal team noticed the open hole in his back. When his family arrived in the neonatal intensive care unit to visit Aloshua the morning after his birth, they learned that he had spina bifida, needed an oscillator to keep him breathing, and would need to be transferred to Arkansas Children's Hospital for surgery as soon as he was stable enough to come off of the oscillator.
By the time he was two days old, they'd learned that he had an Arnold Chiari Malformation (ACM), severe lung problems, a genetic defect, and a hole in his heart. At only four days old, he had his first surgery to repair the open hole in his back from spina bifida.
Within days of his first surgery, the fluid build up in his lungs was reaching critical levels. His head was growing so large from hydrocephalus that doctors were desperate to get him into surgery to place a shunt. They started an entirely new round of drugs to address the fluid build-up and he underwent his second surgery (to place the shunt) before he was a month old.
Three months later, Aloshua was allowed to go home for the first time since he was born. By November, however, his family and medical team began to grow concerned over his weight. He ate three times what a baby twice his age ate, and continued to lose weight rapidly. He was hospitalized again, and the family received more bad news.
.Aloshua's intestines and appendix were on the wrong side of his body. He had hernias and a hole in his diaphragm. He needed another surgery to repair the hernias and shift his intestines and remove his appendix. So, he had another surgery. And then another. And another. And another.
A few short months later, Aloshua became seriously ill and was rushed back to the hospital. Somehow, MRSA had gotten into his shunt and caused a serious staph infection. He was rushed into surgery to remove the shunt and place a temporary drain tube. Over the next weeks, he dropped back down to eight pounds while his medical team worked to rid him of the infection so the shunt could be replaced.
While in recovery from the shunt replacement, he coded again. He spent days in a medically induced coma in intensive care, fighting off pneumonia that seemed to have developed overnight. He was so swollen during those days that he didn't even look like the same baby who'd been so tiny just days before. Despite the setbacks, he pulled through it as he always did and got to go home again.
But he'd stopped growing once again.
At a year old, it was evident that his medical team could risk waiting for him to grow no longer. He weighed only twelve pounds and was eating 24 hours a day, 7 days a week via G-Tube. He could not lift his head, sit up or hold his own pacifier. He had these huge, serious eyes and this tiny little body. He'd already had a shunt, two revisions, a G-Tube, was on oxygen 24/7, and was in and out of the hospital for lung problems weekly, but it was far from over for him.
He was fitted with a trach shortly after his first birthday and coded once again. A blood clot had developed in his trachea from surgery and cut off his oxygen supply. Another emergency surgery later, he was once again stabilized, but there was more bad news to come. The doctors were no longer confident that he could handle breathing on his own. He would need to be on a ventilator 24/7, possibly for years.
For five months, his mom (Courtney) and brother (Kaia) lived at the hospital, waiting for Losh to grow big enough to go home once more. During those months, entire lives reordered.
His brother was taken out of daycare because the infection risk to Aloshua was too great. His family temporarily relocated from their hometown to an apartment near the hospital in Little Rock. What had once been his nursery was transformed into an at-home intensive care unit.
When he finally got to go home again, he came with more medical equipment than anyone knew what to do with: A ventilator. 2 suction machines. Oxygen. An IPV machine. A feeding machine. A pulse-oximeter. Trachs. A stander. A walker. Leg braces.
A brown paper grocery bag of medication. Boxes of urine catheters, of suction catheters, of trach ties, special soaps, drain sponges, expensive formulas and blenderized foods, feeding bags, syringes...Ventilator, Pulse-Oximeter & Oxygen
It was never a hardship for his mom though, and, with the help of family and friends, she's managing to give Aloshua the normal childhood he so desperately deserves.
His journey is far from over though. He is six years old now and only recently learned to pull up on furniture without help and to walk with the aid of braces and a walker.
He's had nineteen different surgeries, has speech, occupational and physical therapy four days a week and weighs only thirty-two pounds. Part of his diaphragm is paralyzed, his lungs are damaged, and his doctors are concerned about the health of his kidneys.
He's been in and out of the hospital since birth, is tube fed, and requires the use of a portable ventilator each night. His immune system is compromised, he has to wear a face mask when out in public, and he only recently began to talk.
Despite all he has endured, Losh is the happiest, most intelligent child you will ever meet. He has a ready smile, an easy laugh, and greets each day with the spirit of a champion. When he pushes himself through the store in his little wheelchair, everyone he comes across stops to speak with him and leaves with a smile on their faces.
So here we are as a fandom, once again asked to help one of our own. I put myself in the mindframe of if this was my child…
So it is with a pure heart, I come to you all asking for you to help in any way you can to help lighten some of the burden this family has had with medical expenses and equipment for Losh. Their family is one of fandom and we aren't anything if we can't help ourselves. Let's do what we can to help this sweet little boy receive the care he needs.
What is needed for Losh:
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 they 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.
~~*What we can Do!~~*
Unfortunately, The family simply cannot come up with $18,000.00 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 They are turning to all of us for help.
They are not asking for something for nothing. Those who donate are given something back, so they 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.
~*Where I come In~~*
I will not only be donating. But I will Be donating graphic designs for the merchandise I believe and will be writing for the Compilation.
Where you come in on my part-
I'm undecided on what to write. So I'm turning to you. Would you like an Outtake/Futuretake of this story or something new?
With Cambion:(Futuretake)- Edward and the nudger years after The birth. It won't hurt the story to read this.
Not so Average- (Futuretake)- 20 years after the prologue (again. Won't hurt the story.)
Living Amongst Hell- (Outttake)- ( The birth of A princess. (New characters birth and purpose.) Will not be in Living amongst hell at all.
Halloween and other meaningless tales. (One shot)-Something new.
Ghost.-Renessmee has to trace her family tree, although she finds her family quite boring she takes on the task by starting with the graveyard. She takes pictures of the grave stones and names, while using her trusty notepad to write down dates and inscriptions. As the evening comes, she relaxes with a healthy apple, leaning against a headstone when her imagination runs wild. What she'll discover there will not only be a gift, but a glimpse into a previous life lost. Rated G Fantasy Romance.
If there is something else you would rather have me write., please leave a review or email me through the site.
Thank you all for reading and don't forget to visit this blog to donate. More and more authors are signing up and if you can don't contribute your writing skills! It's for a very great cause.
Here is the link to the blog, Hope you all have a great day! VIST THE BLOG AT teamlosh . blogspot . com Just remove the spaces when you put it in your browser.
*Hugs and kisses to you all*
To those of you the email, face book, twitter, and gchat me with encourage for writing and school I love you all the most and I'll try to update as soon as I figure out what to write for this compilation.