Help a now 15 yr old get her life back

For: Mya and family
Organizer: Larry L
$9,515
of $100,000 goal.
Raised by 94 donors
9% Complete
This fundraiser is closed. Thank you for your support!

The Story

In 2010 Mya was an active and out going young girl.  She was on a swim team, rode horses, was a straight A student in school and loved to play the flute.  Then, in May of that year, Mya started having severe abdominal pain.  We didn't know what was wrong and took her to the ER.  After several days in the hospital, the doctors determined she was not having an Appendicitis.  They disgnosed her with an Omentum Infarct and discharged her without any real remedy.  She continued to have pain and fevers and multiple hospitalizations.  Finally, after going to multiple hospitals she under went abdominal surgery in July 2011.  They removed her appendix and a Meckel's diverticulum which is tissue left over from when the baby's digestive tract was forming before birth.  In Mya's case it caused the constant pain.

Soon after the surgery, she became nauseous and slowly lost her ability to eat until November 2011 when she was put on her first feeding tube.  The doctors once again had no idea what was wrong with Mya.  She continued to get worse but found in January 2012 that she could actually eat.  When she did eat, though, she was doubled over in extreme pain.  Still the doctors didn't know what was wrong.  This went on for months with multiple hospitalizations and specialists.  Finally in April, a Dr. at an adult GI clinic diagnosed her gallbladder failing.  We had to go to four ERs before we could get someone to perform surgery and when they did, they removed her gallbladder. 

She started eating again with the aid of medicine until the medicine stopped working and she had to be put on another feeding tube which she is on to this day.  She can eat once again, but again with extreme pain.  Of course she has no gallbladder so the Dr.s as always have no idea what is wrong.

During this whole time, Mya was in and out of the hospital so much that she was hospital home bound for school for most of 6th grade and all of 7th grade and is now being home schooled.  She has no life really to speak of. She has to be on a feeding pump roughly 18 hours a day.  Her dad had to quit his job in 2010 to help take care of her and has since started his own company but is very limited in terms of time dedicated to the buinsess. As such, between the medical bills and everything else, Mya's family is financially devastated and are in jeporady of losing their home.

Your support will go to helping with the medical expenses and day to day living expenses as well as trying to get Mya her life back so she can enjoy herself once again.

Fundraiser Updates

Posted on June 19, 2014

Posted on June 19, 2014

Hello!  It has been nearly two months since my last update.  To all of you that have helped support us financially and through prayer, my appologies.  So much has happened since April but we are no further along to Mya's recovery or cure.

Let's see... Mya went down to West Palm Beach a couple of months ago for what we thought would be abdominal surgery to clear whatever it is that is blocking her intestines.  Unfortunately, this trip turned into a real nightmare for the whole family.  The surgeon wanted to perform a fundoplication at the same time as the abdominal surgery.  This procedure takes part of the stomach and wraps it around the esophagus to prevent GERD or throwing up.  While we didn't argue that Mya may need this procedure, we (parents and her doctor) tried to explain that Mya probably could not handle both surgeries at the same time.  Instead of agreeing with us, he went nuts and called the Dept. of Children and Families reporting that we were trying to kill our daughter.  Well, we had to play this out - my other two daughters were called out of school to be interviewed, Melissa and Mya were interviewed twice, once in West Palm then again at Wolfson's, I was interviewed and they had to come out to the house.  Needless to say, after they did their interviews and inspection of the house, they realized what a farce the whole thing was.  The result of this doctor calling DCF, though, had a severe impact on Mya. Her doctor and a surgeon here in Jax that has done procedures on Mya in the past wanted her back in Jacksonville.  But the return (via ambulance) was delayed two days and hence we lost the window of opportunity for this surgeon.  I can't tell the emotional toll it took out on the whole family, especially Melissa.

Well, she returned to Wolfson's via ambulance and was there for about a week with nothing more than trying to get her stabilized.  She was discharged and sent home.  Being at home didn't work out with the other two girls running around and Mya's need for calm and quiet so she and Melissa took up residency at a hotel downtown where they are now, waiting for an appointment with this local surgeon.

As you can read, we have been through hell because of the surgeon in South Florida and nothing was accomplished.  Mya really needs abdominal surgery and we still don't know when that will happen.  The surgeon is going to 
initially perform an upper and lower endoscopy to see what is going on but beyond that...

A note about our fund-raiser.  I set it for a year (last year) and it ended in April. I am not sure I can extend it.  If you like to continue your financial support or know some one that wants to help, you can always continue to use PayPal - [email protected]  Of course, your continued prayers and thoughts are most welcome.  Thank you and G-d Bless.

Posted on April 21, 2014

Posted on April 21, 2014

Good day to our wonderful supporters!  It has been some time since my last post.  This is mainly becuase it is very difficult to write these updates.  I am torn between just keeping a lower profile and letting it all be known.  Anyway, a lot has happened since my last update.  Mya spent over a week in the hospital this month.  She managed to be home for her birthday but went in the next day.  This is the second year in a row that she and Melissa missed my birthday.  They performed many tests at the hospital and again the tests were all pretty much inconclusive.  Mya's condition is so evasive it is mind boggling.  She was anemic and needed a blood transfusion.  She was also very backed up and the Golytely they used did not completely clear her.  While she was there, her doctor was able to witness the dire straits she is in and the challenges we face caring for her at home.

The plan now is to meet with a surgeon on Friday and determine if a bowel restructuring will help her digestive system.  This is a rather major surgery which entails removing a section of her intestines.  We'll know more on Friday.  This won't address what ever is the underlying cause, but maybe it will help to get her off the PICC line (which has been almost a year now) and maybe get to eating again or at least using her fedding tube.  After that or before depending on timing, we are going to try and get her to a Rheumatologist in Atlanta.  Much of what she is experiencing may be rheumatoid related and may be the source of all this.  Who knows.  

Finally, (I know, long read), I want to once again thank you all for your support.  The money we've received has helped pay for Mya's prescriptions, other medical and hygene needs as well as just some basic comfort items to help Mya get through the day.  G-d Bless you all!

Posted on March 12, 2014

Posted on March 12, 2014

Good day, all.  Here is the latest.  We are still waiting to hear whether Mya will be going to Houston or not.  It's been about 3 weeks and still no word.  We have two doctors working with us trying to get her there.  In the meantime, we are going to start trying to get her to a place in Milwaukee.  

Her genetics doctor sent out for testing for MNGIE (http://ghr.nlm.nih.gov/condition/mitochondrial-neurogastrointestinal-encephalopathy-disease), but as expected it came back negative.  This is both good news and bad news.  The good news is the type of Mitochondrial disease they tested is terminal.  The bad news, is it was not exhaustive so we are still in the darK and she still may have MNGIE.  We are going to get rheumatoid involved here or in Houston which ever happens first.

Anyway, Mya keeps suffering, we keep trying very expensive medications to help with the symptoms, both her parents are exhausted and I continue to find it difficult to work.  

More updates later and as always, thank you for your prayers.

About the Organizer

Report Fundraiser

Report Fundraiser

Please report potential fraud and Terms of Service violations only. Personal disputes will not be reviewed.

We require this in case we need to contact you for further details.*

* YouCaring will not distribute your phone number to any third parties or use it for marketing purposes.

Comments

Supporters

Add Our Donation Widget to Your Site
Grab Our Widget

Help a now 15 yr old get her life back

Grab Our Widget