Fighting for a cure against
Alexander Disease is a very rare disorder that slowly progresses and is a neurodegenerative disease that is potentially fatal. It mostly affects infants and children causing developmental delays and changes in physical characteristics. Alexander Disease has no cure or standard procedure taken for treatment. The prognosis is poor and with early onset, death usually occurs within 10 years after the onset of symptoms.
On April 5, 2012 our lives were changed forever!! Brielle had a confirmed diagnoses of a very rare Leukodystrophy called Alexander Disease (only 500 reported cases in the world since 1947). Never hearing of this disease, we had no idea what to expect. While reading and trying to educate ourselves about AD our faith was tested! Not only was this a blow to us but we had to figure out how to explain it to Channing and Emry, our other two young daughters.
With some leads from the United Leukodystrophy Foundation, we continued researching and found a medical facility in Maryland, The Kennedy Krieger Institute(KKI, an affiliate of Johns Hopkins) that agreed to accept Brielle as a patient. There is a Neurogenticist team, under the direction of Dr. Naidu, that specializes in Alexander Disease. We took Brielle immediately! As you can imagine, we realized this was going to be an expensive life long fight ahead of us!
On our visits to the KKI, Dr. Naidu put us in contact with Dr. Messing, from The University of Wisconsin in Madison. We agreed to have Brielle become a case study for the University in hopes that maybe there will be a breakthrough of some sort through clinical trials and she become the recipient of the findings.
July 2013, Brielle became more unstable and started losing her balance again, we traveled back to KKI and waited for her EEG results to see if she was possibly having localized seizures in her right leg; results came back negative. Reasons for the instability continues to be unknown but Brielle is advancing nevertheless and is making incredible strides.
Christmas Day 2014, was a major setback!! Brielle loves to dance and sing with her sisters and on Christmas day while visiting family in South Florida, she tripped and fell over a karaoke microphone cord. Being that she does not have the reaction time as kids her age, she hit her face on the tile. After having her lip stitched back together at the local hospital, Brielle was transported by ambulance back to Orlando, to her doctors at Nemours Hospital. Leaving the hospital two days later Brielle had not regained her full mobility but we were glad to be taking her home.
November 2015, Brielle is in Kindergarten and thinks she’s a big girl now that she can go to school with her two older sisters. Her communication ability improved and the more you are around her the more you understand her. She still has tremors in her hands when she writes but she is trying really hard to print all the letters in her name. Fluid range of motion in her legs never came back after the fall but she is "walking" and working to the best of her ability with her family, teachers and therapists to regain what she lost.
March 14, 2016 Leaving in the morning for school, Brielle was walking through the garage and had another fall. She again could not catch herself appropriately and hit her head. She had a mild seizure and was rushed to her pediatrician. Under the pediatrician and neurologists supervision from Nemours she thankfully was not admitted to the hospital for overnight testing.
December 2016 Brielle is in 1st grade and loving it! She has not regained her mobility from her fall in March yet, but we are holding onto hope and staying positive for her. She sports her own hot pink wheelchair and is ready for the world.
April 1, 2017 was not a very fun April Fools. Brielle overheated at her two sister's soccer game and suffered a Grand Mal Seizure! She had to be rushed to the hospital and admitted for overnight observations! A very stressful couple of days but she is a strong little girl and got to come home two days later.
Currently November 2017 Brielle is still in her wheelchair but is now showing more desire for movement! Her legs aren't working much but she did try to stand on Thanksgiving Day...a definite blessing, and we know more are to come :)
The support and generosity that poured out when Brielle was diagnosed and continues to pour out to this day for our daughter is bar none!! We can’t thank people enough for the prayers, time, effort, services and LOVE!!! There is no way we could get through this without everyone!!
Please Continue to Help us Fight a Good Fight!!
**Dr. reports say that children with Alexander’s Disease could possibly pass away between the ages of 2-10. Brielle has already beat the first half of that report and God willing every subsequent report after!! **
Contributions will help with handicapping the house for better mobility, payment of medical bills, medical appointments locally and out of state, and needs that may arise.
With the most sincerity,
The Warren Family~
Derrick, Jarrin, Channing, Emry and Brielle