Help Adeline In The Fight Against Leukodystrophy
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A heartbroken mother and father whose baby girl is fighting a rare form of leukodystrophy is hoping for the public's help as we know we will be facing numerous medical and traveling expenses. Adeline may need experimental treatments to give her any hope of survival throughout her life.Daddy had to step down from his position at work to help be there during hospital stays, tests and to help with the other two children we took in .
You’ve got a beautiful, perfect child who gets to 3 and then they slowly declines. Adeline is a very smart, intelligent, funny, outgoing and happy little girl. She was very advanced in comparison to her age group. I had many people asking me her age and when I would say 1 or 2 , they would respond with “she’s very very smart”!
Adeline absolutely adores her mommy, daddy and nana more than anything in the world, however mommy is her other half her hero and she’s mommy’s hero!
Adeline also has a 9 year old sister and 8 year old brother (by heart) who she loves dearly.
Just a few weeks before her 3rd Birthday, she began walking inward with her left foot and on her toes. She then started falling, not being able to get back up on her own. She Was very fatigue and didn’t want to eat much at all. I knew my energetic, happy little girl was sick and something was really wrong, no matter how much we didn’t want to believe it. We took her to the pediatrician, who did xrays and sent her to physical therapy. The physical therapist was so concerned and had an on call doctor call me to say, head to upstate children’s hospital immediately that our daughter may have a tumor compressing on her spinal cord . From that phone call on , our world has been turned upside down. Adeline was admitted for a week, and underwent a 3 hour MRI, lumbar puncture and tons of blood work. She seen countless doctors who also thought a tumor on the spinal cord. However, there was no tumor but worse news . We were told she has white matter disease on her brain and syringomelia throughout her spinal cord. The neurologist then thought maybe she had ADEM and a tethered spinal cord. So they started her on a high dose of IV steroids for 5 days straight with oral steroids to take home for another 4 weeks. By the time we got discharged from the hospital, the doctors were really unsure of what was wrong with her. In the mean time we had several scheduled appointments with the neurologist and neurosurgeon in upstate who wanted to open her up “thinking”she had a tethered cord. Me being the mother had instincts to not let them do that and I knew time was of the essence and I needed a second opinion.
I called CHOP (Children’s Hospital Of Philadelphia) and they got us in pretty quickly after receiving Adeline’s records. We have been to CHOP several times now and have a diagnosis of a leukodystrophy and more results pending of what type it is. They did do another MRI and unfortunately no improvements but fortunately didn’t get worse. We have been searching for answers for 5 long months now. We definitely were not expecting it to be this terrible, horrific disease.
There are approximately 52 different leukodystrophies and no cure. Depending on the type , there may be a treatment .
leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. Each type of leukodystrophyis caused by a specific gene abnormality that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain.
Adeline receives INTENSE physical,occupational and speech therapy at our local hospital and constant therapy with myself (her mother ) I keep her going every day so she doesn’t get weaker. We her parents, have spent countless hours researching this terrible disease on the internet and looking for ways to try and help her brain health. We started a fruit/veggie smoothie for her as soon as we left upstate hospital and believe that is helping her in some way. Adeline has gained some strength back and is able to do things she used to do before this terrible disease attacked her. (Thank you God)!
We still have hope that she will be healed as we believe that miracles can happen, being she is one.
She does not deserve this and there is no child on this earth who would deserve something like this. Never. We, as Adelines parents, have to try everything possible on this earth and beyond to help our lovely baby girl. We are VERY determined to help our daughter in every way we can.
I’d like to raise as much money as possible not only to help our daughter but to help further the research of Leukodystrophies. I want to donate everything that We don’t need towards Leukodystrophy Research.
A last thank you to everyone for reading this and considering a donation.Adeline has a mom and dad and sister and brother and nana that love her more than anything.
Please , help us fight for Adeline and all the other special children with this very bad disease!!

You’ve got a beautiful, perfect child who gets to 3 and then they slowly declines. Adeline is a very smart, intelligent, funny, outgoing and happy little girl. She was very advanced in comparison to her age group. I had many people asking me her age and when I would say 1 or 2 , they would respond with “she’s very very smart”!
Adeline absolutely adores her mommy, daddy and nana more than anything in the world, however mommy is her other half her hero and she’s mommy’s hero!
Adeline also has a 9 year old sister and 8 year old brother (by heart) who she loves dearly.
Just a few weeks before her 3rd Birthday, she began walking inward with her left foot and on her toes. She then started falling, not being able to get back up on her own. She Was very fatigue and didn’t want to eat much at all. I knew my energetic, happy little girl was sick and something was really wrong, no matter how much we didn’t want to believe it. We took her to the pediatrician, who did xrays and sent her to physical therapy. The physical therapist was so concerned and had an on call doctor call me to say, head to upstate children’s hospital immediately that our daughter may have a tumor compressing on her spinal cord . From that phone call on , our world has been turned upside down. Adeline was admitted for a week, and underwent a 3 hour MRI, lumbar puncture and tons of blood work. She seen countless doctors who also thought a tumor on the spinal cord. However, there was no tumor but worse news . We were told she has white matter disease on her brain and syringomelia throughout her spinal cord. The neurologist then thought maybe she had ADEM and a tethered spinal cord. So they started her on a high dose of IV steroids for 5 days straight with oral steroids to take home for another 4 weeks. By the time we got discharged from the hospital, the doctors were really unsure of what was wrong with her. In the mean time we had several scheduled appointments with the neurologist and neurosurgeon in upstate who wanted to open her up “thinking”she had a tethered cord. Me being the mother had instincts to not let them do that and I knew time was of the essence and I needed a second opinion.
I called CHOP (Children’s Hospital Of Philadelphia) and they got us in pretty quickly after receiving Adeline’s records. We have been to CHOP several times now and have a diagnosis of a leukodystrophy and more results pending of what type it is. They did do another MRI and unfortunately no improvements but fortunately didn’t get worse. We have been searching for answers for 5 long months now. We definitely were not expecting it to be this terrible, horrific disease.
There are approximately 52 different leukodystrophies and no cure. Depending on the type , there may be a treatment .
leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. Each type of leukodystrophyis caused by a specific gene abnormality that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain.
Adeline receives INTENSE physical,occupational and speech therapy at our local hospital and constant therapy with myself (her mother ) I keep her going every day so she doesn’t get weaker. We her parents, have spent countless hours researching this terrible disease on the internet and looking for ways to try and help her brain health. We started a fruit/veggie smoothie for her as soon as we left upstate hospital and believe that is helping her in some way. Adeline has gained some strength back and is able to do things she used to do before this terrible disease attacked her. (Thank you God)!
We still have hope that she will be healed as we believe that miracles can happen, being she is one.
She does not deserve this and there is no child on this earth who would deserve something like this. Never. We, as Adelines parents, have to try everything possible on this earth and beyond to help our lovely baby girl. We are VERY determined to help our daughter in every way we can.
I’d like to raise as much money as possible not only to help our daughter but to help further the research of Leukodystrophies. I want to donate everything that We don’t need towards Leukodystrophy Research.
A last thank you to everyone for reading this and considering a donation.Adeline has a mom and dad and sister and brother and nana that love her more than anything.
Please , help us fight for Adeline and all the other special children with this very bad disease!!
Organizer
Stacy Phillips
Organizer
Castle Creek, NY
