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A Cry for Help for my Sister with medical problems

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January+25 Sophia+4+birthday+%2820%29A A Cry for Help for my Sister with medical problems
Meet Amy, my sister. She suffers from uncontrolled seizures that are causing brain damage and is having significant regression. She has been diagnosed with partial complex seizure which has become worse and spreading from the left side of her brain to the right, with brain damage to the left side due to uncontrolled seizures. She also has A.D.H.D., predominately inattentive type & Anxiety Disorder, A Missing Chromosome, as well as Sleep Apnea.

 

Hey everyone! I first want to thank you for taking the time to read this and hopefully help or give some insight. This is on behalf of my 9 year old sister who has a various amount of medical problems. We are not asking for money, but donations would be very helpful. I will explain further shortly.

 

 The number one thing we are interested in is finding a DOCTOR
who is able and/or willing to help. Any information, doctors, contact, etc is what we really need right now.
 

As far as any money goes, my parents are at $70,000 (and growing daily) in debt trying to cover medical expenses, doctors, research tests, counseling, etc. While the number one reason for this post is to hopefully draw enough attention to get information and find a doctor who can help our family, any donations to pay for these bills would mean a lot as well. They do have insurance coverage, but I’m sure as many of you know that only goes so far. Medicaid (state government insurance) denied my sister for coverage because “they make too much”. Don’t get me started on how the government system is.

 

With all that being said, here’s the details of what’s going on. PLEASE if you can help. Leave a comment, email me, or if you’re making a monetary donation, use the paypal button and make a note that it’s for my sister and I will give it directly to them. Thank you in advance to everyone who takes the time to respond/help.

 

In short

My sister’s name is Amy. She is 9 years old. Born December 2, 2002. According to Amy’s latest evaluation, her seizures are still not under control and the seizure has cause some brain damage.  Bottom line, if we cannot find a doctor that can get the seizures under control Amy’s condition will worsen.  Amy’s evaluation indicates an actual loss in function as compared to a failure to develop at an expected rate.

 

Amy’s cognitive difficulties are related to her seizure disorder (and possibly her chromosomal abnormality).  Additionally, her behavioral and emotional dysregulation is likely due, at least in part, to brain injury related to her  seizure disorder (and possibly her chromosomal abnormality). Although Amy is reportedly experiencing pseudo seizures in addition to genuine seizure activity, the actual seizure activity is obviously causing significant insult to her brain.
 

The full information
 –UPDATE– (2/20)

 

 


We removed the medical evaluation due to security reason as per recommended by the doctors reply to my mom which I quoted below. If you are a doctor, you can leave your information in order to get a faxed copy of the evaluation if needed. Thank you for the understanding.
 

 

 


I had the opportunity to speak at length with Dr. T*** today.  She made it clear that herself and Dr. Z***** believe that Amy’s seizures are the result of her chromosomal abnormality.  Given this information and other insights shared by Dr. T****, I will be making some edits to the summary of Amy’s report. Although these edits will not affect her test results or recommendations, I am writing to ask that you not send out Amy’s Neuropsychological Evaluation report to other professionals before receiving the edited version.  Also, please be careful when sending out personal health information, especially something so sensitive as a Psychological or Neuropsychological Evaluations via E-mail.  I do not E-mail reports, as I do not believe this is a safe means of sharing such information.
 

 

Right now we are in a desperate situation. Medical bills are way over their heads, but as I already stated, they are willing to do what it takes in order to find a cure or some help with the situation. My mom is working herself sick, literally, staying up all hours to try and research in hopes of finding information. Whether it’s a doctor or information leading to another test to try out to medicines that can help resolve this medical illness.

 
Screenshot 19 A Cry for Help for my Sister with medical problems

 


 
If you are a doctor, no matter your location (although we are in New Orleans, LA) please feel free to contact me at closetsamples@gmail.com or leave a comment with your contact information for me to pass along to my mom.


 

Please make a note that the donation is “for Amy” so I can be sure that it gets sent directly to her as this is my own personal Paypal account where I will with draw the money from my Paypal debit card. Please know that ALL donations of any amount are very much appreciated.
 

 




pixel A Cry for Help for my Sister with medical problems

 

 

All information and comments are welcome. Thank you again for your support!
On behalf of myself and my family.

 

 


**UPDATES**
 
–2/24/2012
I wrote up an update with the newest info on my sister. Rather than adding it all on here here’s the post:
http://www.closetsamples.com/2012/02/update-new-info-on-my-sister-with-brain.html

 

 

–3/22/2012
Here’s the latest information:
http://www.closetsamples.com/2012/03/update-newest-info-on-my-sister.html

 

–6/11/2012
Update on Amy, she is the only KNOWN person with the same chromosomal deletion she has:
http://www.closetsamples.com/2012/06/note-update-on-my-sister-amy.html

 

–9/27/2012
Update on Amy, she is now attending Children’s Hospital in Texas:
http://www.closetsamples.com/2012/09/note-update-on-my-sister.html 

 

–10/8/2012
I just posted a wish to try and help my mom out with food, money, etc:
http://www.closetsamples.com/2012/10/note-update-on-amy-i-just-made-wish-on.html

 

–11/1/2012
Amy finally had a seizure at her appointment in TX Childrens Hospital:
http://www.closetsamples.com/2012/11/note-update-on-amy-she-is-in-tx.html

 

 –06/24/2014
Amy is hardly eating:
http://closetsamples.com/update-amys-rare-medical-condition/





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 A Cry for Help for my Sister with medical problems

❥ About Ashley

My name is Ashley and I am the founder and owner of Closet of Free Samples. I'm also a nut for shopping on Amazon.com! I have always had a love for freebies, scoring awesome deals and the computer – which is why I'm here. I am dedicated to bringing you the best free samples, bargains and my honest opinions on products I try. I love trying new products so if you have something you want me to review please don’t hesitate to send me an email and ask me about working with you! Read more on my About Me Page ➜

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37 Comments

  1. My daughter suffered a head injury when she was 11 months old. She had to have 1/4 of her brain removed. Her brain injury is a traumatic brain injury with a diffuse axonal brain injury (due to the lack of oxygen), so adding the surgical removal she has only about 33% of a functioning brain. She has partial complex, tonic clonic (new name for grand mal seizures), and absent seizures and even on meds, her brain is in constant “seizure activity”. She is now almost nine, with a brain shunt (hydrocephalus), moderate mental retardation, left sided hemiparesis (left sided weakness/paralysis/cerebral palsy), ADHD, Sensory Processing disorder, um… I know I am missing some, lol. However, she sees neurologists/neurosurgeons/neuropsychologists at Phoenix Children’s Hospital (Arizona) and they are top notch. As a matter of fact, the neuros are from the nationally acclaimed “Barrow Neurological Institute” who partnered with Phoenix Children’s for pediatrics.

    If they were willing to travel and see doctors there, they might get some help for the neurological issues.

    Lots and lots of hugs to your family and your little sister. She’s beautiful.
    http://booknerdextraordinaire.blogspot.com/

  2. HI HUNN MY NAME IS OPAL BELL PLZ EMAIL ME WITH SOME INFO LIKE WHERE U LIVE AND I WILL SEE IF ANY OF MY FRIENDS CAN HELP OR IF I CAN HELP FIND A DR WHO CAN HELP HER MY ADOPTED COUSIN HAS SOMETHING SIMILAR BUT SHE CANT BE HELPED SHES MISSING THE PART OF HER BRAIN THAT CONTROLS PRETTY MUCH EVERYTHING SHE IS 28 BUT HAS MIND OF A 2YR AND SHE HAS A FORM OF SEZURES THAT EVERY SEZURE SHE IS DIEIN SLOWLY

  3. What an adorable sister you have! For all of her troubles and pain her light shows straight through that smile of hers!

    I have suffered from a chronic illness for over a decade now and totally understand the toll medical bills can have on a family- even when you do have insurance!

    I’ll be praying for Amy and your entire family. I wish you all the best!

  4. First, I am praying for your sister and family. I lost a niece in 2002 due to W disease. I never knew until those visits there were so many sickly
    children in the world. Contact St. Judes Hospital and Make a Wish Foundation and John Hopkins Hospital They may have contacts that can assist you.
    I wish you well.

  5. I agree with the poster above that contacting St. Jude’s is a good idea. I also recommend sending a request to the Stanford Health Library (I volunteer there) for information. The service is free and confidential and it is a good way to gain a greater understanding about what is currently known about your sister’s chromosome 17 deletion and its health consequences. The library website is:http://healthlibrary.stanford.edu/ and the contact email is: healthlibrary@stanfordmed.org
    I wish you the very best. Your beautiful little sister and your parents are so fortunate to have you.

  6. You are all in my thoughts and prayers! If you haven’t already, get in contact with St Jude’s Hospital in Memphis, the Make A Wish Foundation and Shriners Hospitals for Children. All the best to you!

  7. Hi, I found your site just today and tweeted this out and g+ to friends, maybe more people can help. You all are in my prayers. As a mom of 3 healthy kids, I can only imagine what your family is going through. I wish you all the best.

  8. I am so sorry for your little sisters medical problems. I have not known anyone with these types of medical issues. I will keep her in my prayers.

  9. I am so sorry for your little sisters medical problems. I have not known anyone with these types of medical issues. I will keep her in my prayers.

  10. Your sister is adorable. I am also sorry for all of her medical problems — there were some good ideas about contacting Stanford or St. Jude’s — someone may be willing to help. Please keep trying. I am praying for you.
    Digicats {at} Sbcglobal {dot} Net

  11. I work with children with special needs. I understand how difficult a situation like this can be for the entire family. I hope you can find the answers that you are looking for. I don’t know if that would be helpful or even possible but have you thought about contacting reporters to do a show on your sister? We see so many shows on TLC and other channels about rare medical conditions. It would provide you with great exposure to doctors or people who know doctors or people with children with a similar condition.

  12. Ashley,my Daughter just started having Grand Mal seizures and Petit Mal seizures due to a combination of medications that she was on to help with another disability. The Grand Mal she had on Feb. 4th, 2011 caused permanent brain damage.

    As for finding a specialist/doctor, I sincerely wish you the very best of luck as I haven’t found any yet either. I know how financially difficult it is to have a loved one with these types of disabilities. We are on full state assistance now because of it.

    We are constantly being referred to the Mayo Clinic. Maybe that is something to look into?

    I will pray for your whole family! Your such a good sister! I’m impressed by your blog about Amy!

  13. Sorry to hear about you’re situation but I have a special needs child myself, my youngest son has Cerebral Palsy ,A.D.H.D., a mild form of Autism , and developmentally delayed. He gets medi-cal and SSI.

  14. What an adorable little girl, I’m so sorry she is going through so much. I really wish there was a way I could help. I hope you can find some answers about her conditions soon and that people can/will continue to donate. I will be praying for her

  15. I’m sorry to hear about what your sister and parents are going through! I hope someone is able to help and that Amy is able to get the services needed to help her. I just read the updates and was excited that someone was coming to spend time with Amy, then saddened that she took advantage of your parents.

    Hopefully a doctor is able to help her. Perhaps sending her medical info (with the edits that the one doctor mentioned wanting to make before her medical info was sent out) to the neurological departments of all the big name and/or teaching hospitals might help.

    http://www.rarechromo.org/html/home.asp

  16. I am in the medical field. I feel for your family, expecially your mom. My own mother has a brain cyst the size of a grapefruit in her brain and has a brain shunt to relieve the cerebral fluid in her brain. She used to have petite-mal seizures, but medication has helped. She went to Mayo clinic in Minnesota and they saved her life 20 years ago.
    They will not do surgery due to a high risk of stroking. She only has partial vision in one eye due to the cyst causing pressure on the optic nerve. Her olfactory nerve is also reduced. But she is alive and very verbal.
    I am a big fan of Mayo Clinic in Rochester, Minnesota.

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