Debriell Amoni's Life

Debriell's Story

Debriell Amoni Flippins was born August 28,2008 she was 5lbs 12oz and  21 Inches. Debriell was born 2 hours before my 19th birthdate. At birth Debriell was so precious and healthy. She passed all her newborn screening with an  A+. Two days later Debriell was brought home to her older sister Trinidy. It was a joy to welcome Debriell to our family. I was anxious for Debriell to get older to interact with Trinidy. As time went by I got just what I wanted. Debriell crawled around faster than any 7 month old I knew. She held her own bottle and threw it down once it was empty which was so hilarious. She would even climb out of her 3 foot crib at the age of 10 months. She played and fought with her sister, aunties, and uncles. She was considered the bully of the family. At 13-14 months she began to say little words like stop, and  “Ma” which I was so happy because Trinidy didn’t call me mama until she was 2 yrs old.

 

           At 14 months I became concerned. Debriell had became very clumsy which she was taken to Illinois Bone and Joint where she seen a podiatrist. According to the Doctor, Debriell presume to be normal. At Debriell 15 month check-up, her pediatrician discovered that Debriell has a Developmental delay. I was then connected with Early Intervention in May of 2010. Time went by and Debriell started to slowly lose interested in playing, and mingling like she use to. On Friday July 2, 2010 we were at the park where she was being pushed on the swing. Debriell showed no interested and eventually was so limp that she clasped over the swing. She was then taking to Lake Forest hospital then rushed to Children Memorial of Chicago Il. They ran tests but due to it being a holiday weekend getting result and the right Doctor to look at Debriell was impossible. Debriell was sent home where we waited for the upcoming appointments they schedule at her discharge.

 

   Long story short we went though blood drawing , MRI, Pediatricians, physical therapy occupational therapy, developmental therapy and Speech until someone mention genetics due to her MRI showing a lack of Myelin. Genetic was behind the scene working and I was up all night thinking, crying and praying for the best. Finally I got a call on September 25, the genetics counselor stated she believes Debriell has GM1.  At the moment I didn’t have a clue of what GM1 Gangliosidosis was but during that phone conversation I asked all the right but wrong questions. I then found out the disease was terminal at a very early age. That was the first time I literally had 1 million thoughts running through my head. September 29, 2010 Debriell diagnosis was confirmed. She has Juvenile/Late Infantile GM1 Gangliosidosis. I then became obsessed with the disease where I found out many interesting but hurtful things. Debriells life flashes before my eyes everyday. I think about the fact that she has every limb and every organ in her body but she can not use them properly. It is very devasting to know that my daughter may never walk, talk, dance, go to Prom, tell me she loves me, etc. Her life expectancy is 10 years old and I wish she could really enjoy those years with the use and activity of each and every one of her limbs.

 

Well unfortunately to this day I’m not sure why GOD has choosen us but I learnt to stop asking why.  We are all focusing on making as many good memories with Debriell as we can. Please keep us in your daily Prayers!!!