A Chance For Aaliyah

A chance for Aaliyah is what we have been praying for, for quite some time now.  It is what she has been praying for.  Here is a 12 year old that for a majority of her life, has suffered from what we believe to be epilepsy.  For several years we have tried different medications, had several hospital stays, and tons of EEG’s, only to be left with confusion about her health.

 This has been a struggle for us all emotionally as a family, but both emotionally and physically for Aaliyah.  We have tried to accept that this is Aaliyah, and that epilepsy is a part of her life.   However, this has become harder to accept when our team of doctors still can’t seem to put a grasp on her condition. 

The team that we have been working with seems to have different views on Aaliyah’s condition.  Some of the doctors seem to think she has epilepsy and a couple seem to think not.  When we heard that her episodes may not be Epilepsy we were somewhat relieved and wanted to get her off the medication.  Then we saw someone different who thought that she is definitely epileptic and wanted to leave her on the medication.

 With her recent EEGs and no seizure activity, we can see why the doctors are going back in forth.  Her EEG’s shows slow brain waves and spikes that indicate there are possible seizures.  The episodes she has are staring spells, and some twitching.  If you don’t know about these type of seizures you would think she is just day dreaming.  There are other symptoms that go along with this such as trembling, neck and back pain, speech disorder, self-harming, learning disability, and the list could go on.  Due to this, Aaliyah misses out on a lot physical activities.

 We have gone for a second opinion that was not what we expected, as the doctors simply read our previous doctors notes and agreed with them.  This pushed us away from wanting to get any other opinions from other doctors and lead us to trust our doctors here at home. 

One day Aaliyah was having a very bad and emotional day. She went into a room and began to cry and what shocked us most, talked to God.  Her exact words were “I don’t want to be like this anymore. Help me God. I just want to be normal God. I want to learn, I don’t want to cry anymore, I want to be happy, I want to make my family happy. God I don’t want Epilepsy any more, help me, please.” 

As a parent, that was the hardest thing to listen to. It will be imbedded in my head and heart forever.  This is when we realized that we couldn’t settle for the answers we received concerning Aaliyah’s condition. Our baby girl was a begging for a chance to fit in, and we had to do something about it.  We begin to research and find types of Epilepsy that we never heard of.  Some that fit Aaliyah’s symptoms to a T. 

We also read some awesome success stories that rebuilt our hope and strengthened our faith in believing that there is a chance.   This is what led us to our present journey and hopefully our road to recovery.  We want to get the best of care for Aaliyah, and know she deserves it after dealing with the roller-coaster of a ride with her condition. 

Our goal is to get her to Boston Children’s Hospital, the best children’s hospital in the country.  We know in our hearts that we will get a good solid and final answer if we can just get her there.   It’s very hard to reach out for help, but sometimes you have to call on God to send his angels out to give you a helping hand. 

We as her family pray that you are one of those angels and could help us get her to Boston.  Whether it be by a donation, a prayer, or just sharing this page.  We are thankful for whatever blessings we receive.    Aaliyah has an appointment for June 12th, 2017.   We will be leaving on the 11th with the intention of staying for several days. Donations will go to all medical and traveling expenses. Again, we are thankful for all the blessings received, but we are most grateful for the hope and faith as well. 

This tells us you want a chance for Aaliyah