Help Hannah

For: Hannah Lien
Organizer: Hannah Lien
$12,852
of $50,000 goal.
Raised by 1168 donors
25% Complete
This fundraiser is closed. Thank you for your support!

The Story

Hi im Hannah and im 15 years old! i have a cyst in my brain on a part called the Pineal gland. Everyday i have severe headaches that keep me from doing normal things teens do. I used to be a cheerleader and would have to sit out during games because of the pain. I need to raise money to get the surgery that will remove this little guy. I hate having to ask for help but i really need this and could give back so much when I'm better. Thank you allso much!

Hi I'm Hannah's mom. I have watched Hannah suffer for years with what we thought were migraines. They started when she was in 1st grade. We had been taking her to neurologists for a few years , but there had never been any testing done. In November 2011, she had three seizures in one morning. I saw this and it was heartbreaking and scary. Her pediatrician ordered an MRI. That is when we found out she had a "large cyst on her pineal gland" causing mass effect to the brain.  Over the past year plus, I have been taking her to Cleveland Clinic Hospital for treatment.  They haven't found one medication that can help her pain.  On our first visit there, they also told us she has a tumor in her pituitary gland.  The neurosurgeon told me neither one would shrink, but were unlikely to grow.  However, her cyst has grown over the past year.  Her pain has also grown so much worse this past year. I can't explain how terrible it is to watch her suffering get worse and worse.  She also has other symptoms, such as worsening vision, temporary blindness, not being able to control her body temperature, feelings of dizziness and syncope.

Hannah has made the decision herself (with my approval) to have the cyst removed. This is a very brave decision, as the pineal gland is in the exact center of the brain.  It is a very dangerous surgery.  We have however, found two doctors that perform the surgery endoscopically and have decided to go with the one in the United States.  This doctor is recognized world wide.  We know of quite a few people from our Pineal Cyst group that have had him do the surgery.  The cost is allot less than the doctor in Austrailia, and hopefully we can stay with friends in California for a bit after the surgery.  They usually release you to travel in the first week when the brain is still swelling, which makes flying painful.

Our first goal is to raise 750.00.  That will cover the consult and 6 months worth of pre and follow up phone calls.  We could have this consult this Friday, and the surgery as early as April or May depending on our fundraising sucess.

Hannah has a very sweet soul.  I am confidant that she would love to help others and pay it forward when she is pain free.  She has expressed her guilt to me, about asking for help.

Thanks for now knowing, part of her story!

Fundraiser Updates

Posted on November 7, 2013

Posted on November 7, 2013

https://www.facebook.com/groups/286206781489218/

You can learn more about Pineal Cyst's at this link through Facebook!

Posted on November 7, 2013

Posted on November 7, 2013

Hi all you wonderful caring people!  Wanted to do a quick update about Hannah.  Hannah is trying to wait until next summer to get her surgery.  She said she wanted to do really well in school this year and just brought her first report card of the year home.  She made straight A's for the first time in her life!  I couldn't be prouder! We spent a week in Cleveland for testing and check ups on her cyst.  Her cyst has continued to grow.  They started her on a new medication which was supposed to help her short term.  Neither one of us had any hope in this helping.  Well, to our surprise, it has helped a lot with her headaches!  She now will have maybe one or two bad days a week, instead of maybe one good one.  The medicine reduces the cerebral spinal fluid in her head.  The pharmacist told me it will only be a temporary reprieve as the body gets used to this medicine quickly.  So I treasure this time while she feels a bit better for the first time in many years.  Unfortunately the medicine comes with side effects.  It makes food not taste good to her and gives her painful stomach issues and pains in her muscles.  She has lost weight that she didn't need to lose. I have decided not to got with the doctor we had chosen.  I am hearing of more doctors that will do the surgery.  I continue to search for the right one, and hopefully will have him or her set up when the time is right.  A friend of ours is headed right now to have surgery with the doctor that operated on Gabbi Gifford.  I am looking forward to consulting with him.  Hannah also wants to try the Mayo Clinic as another option. Please keep Hannah in your prayers.  She is a great girl and really deserves a miracle! Thank you all for your love and concern.
Hannah's Mom

Posted on June 13, 2013

Posted on June 13, 2013

Hi All!  I took Hannah to her pediatrician today to follow up on ER visit last night.  She gave hannah 3 prescriptions to hopefully get her through the weekend until we go to Cleveland Clinic.  They are for pain and nausia.  She is still suffering with continuous "electrical zapping feelings" throughout her body.  
Thank You for all of your support,
Hannah's mom

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