Hi, I’ m Aliesha and I’m 9 years old. When I was born, I would turn blue and stop breathing. My parents took me to every Hospital possible, Sick Kids Hospital saved my life. I could’t eat or nurse, as I would stop breathing when I did. Can you imaging that I never had any puree food or solids till the age of 3? I missed out on all the yummy carrots and fruit. Around that age, I started having staring spells. My first one lasted around 3 mins long and it scared my Parents. My Mom took me to the Hospital and the Doctor, after examining me and speaking to mom, looked at her and said ” she’s having a seizure”. My moms respond was ” she didn’t fall tho or shake”. The Doctor said ” she’s having an Absence seizure “. He got on the phone with Sick Kids and off we went. We got to Sick kids and within 2 hours, I had 6 seizures. They hooked me up to an EEG. My mom was more scared than I was. They started me on Trileptal, a drug to help save my life, but for my parents this was extremely upsetting and stressful as this isn’t covered by any drug plan or insurance. That put a huge financial stress on my Family.
I started school at 3 1/2 years old and one day soon after I started, the school called …” Mrs Dustan, Aliesha fell , and she can’t move”. My mom rushed right over. I went to the Hospital in an Ambulance. I broke my ankle. I couldn’t remember what happened. I had my first Tonic seizure. I was instantly hospitalized! I started losing my memory, I couldn’t feed myself, I couldn’t speak like I did and I didn’t remember my mommy. At around 4 1/2 I had my first surgery. It went well but I had to stay in Hospital for a very long time. This was hardest on my mom.
Let her tell you….
I remember that day like it was yesterday! They wheeled her away, I gave away my child in the hands of doctors, nurses, and God. I cried for hours and worried that she wasn’t going to make it. A worry that I wish no parent would have to experience. I thought, she wasn’t the same, we couldn’t understand her, her speech was off …it wasn’t my Daughter but deep down I knew she was. I had to leave and because I couldn’t stop crying. Why did I allow this? Why my daughter? Why my family? What did I do?
Aliesha now uses a speech device, when people don ‘t understand her or on her not so good days. She still has 5 plus seizures a day and it can be up to 4 different types of seizures on any day. They tire her out. People make fun or her and tease her, they don’t understand. This world can be so cruel. No child deserves this. In addition to seizures, she also has Autism. Sharing my story in a book has been a lifelong dream, but the nineties hurt, it hurts daily. I just can’t bring myself to write without becoming overwhelming emotional.
Aliesha is a beautiful soul, just a simple girl who love being pretty and getting her nails done, like any other girl. She is a wonderful daughter and sister. She always sets out to make others laugh and just wants to have a happy normal life. She is truly a blessing.
I’d like to add that It would make such a huge difference if the the health care system covered her meds and speech device. Unfortunately we pay for all of it out of pocket. But as parents, we have to for our baby. These meds and device is why she’s here today… but hey, Let’s save this story for another time. Thank you for reading and God Bless!
