A Cry for Help for my Sister with medical problems

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  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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