Alyssa Krider is a beautiful, energetic 10-year-old little girl. She blessed her parents by coming
into the world in March of 2003. When she was born she spent her first week of
life in the NICU because her body temps kept dropping. But soon she was
discharged and sent home with a clean bill of health. As time went on Alyssa hit
all of the milestones of a happy, healthy, growing child. Her family loved to
see her walk along the side of the furniture and to toddle around holding their
hands. She even managed to take 13 independent steps when she was 11 months old
with a huge smile across her little face.
At about 12 months
old Alyssa fell over on her bottom while she was cruising along the couch and
she started giggling. She was always a momma’s girl and preferred mom to
carry her, so when she wouldn't bear weight on her legs everyone just figured
she was being silly, everyone except her grandma Connie. She insisted we take
her to have her hips checked out fearing something might be wrong. 3 months,
hundreds of x-rays, and several doctors later we were given the news that Alyssa
had a genetic disease called Spinal Muscular Atrophy. The doctor who diagnosed
Alyssa unfortunately has terrible bedside manner and told us this was a death
sentence for our precious little girl. He said that with her type 2 diagnoses
she probably would never see 5 years of age, and we would just watch her wither
away in front of our eyes each and every day and nothing could be done.
It took us all some
time, but we eventually were sent to a web site for Families of Spinal Muscular
Atrophy (www.curesma.org) where we started to get our feet back under ourselves
again. We were given a lot of information and people we could talk to for some
understanding of the disease that was now a huge part of our lives. Yes the dr.
was right. There is no cure or treatment for SMA. BUT... it is NOT a death
sentence. (SMA is the number one genetic killer of children under the age of 2)
We truly believe it is all in how you choose to view it.
Miss Alyssa is now
10 years old and pretty healthy and definitely vibrant and active. She obviously
has a lot of medical concerns and is wheelchair bound since the age of 12
months, but she chooses to face each and every day with a smile on her face and
an extra one to share with anyone she meets. The day has yet to come that she
doesn't touch the heart of every person who meets her in some way. She
underwent a spinal surgery 2 1/2 years ago called VEPTR RODS. Part of SMA causes
scoliosis. The VEPTR rods are expandable titanium rods that they place in
your back to fix scoliosis and still allow your body to grow. Now Alyssa has
minor back surgery every 5 months that grow the rods longer to match her body’s
growth.
The down side to
fixing her back meant she no longer fit in the family minivan in her wheelchair
any longer. She was able to drive her power chair up into the van with a manual
fold ramp. Since that was no longer an option the family started picking her up
out of her wheelchair and placing her in the van and loading her chair by hand.
This worked fine for some time, but as Alyssa has grown so have her chairs.
Alyssa now weighs 115 pounds and her power chair no longer fits in the family
vehicle. So whenever Alyssa leaves the house her mom has to pick her up and
place her in the car and leave her power chair behind and use her manual
wheelchair.
Alyssa is getting
heavier the older she gets and mom is having difficulty lifting her in and out
of the car. Also by leaving the power chair at home Alyssa is giving up her
independence and mobility. She is unable to go and visit family and friends due
to the fact that no one can lift her. The family is hoping one day to be
able to purchase an accessible minivan for Alyssa, so that she will have freedom
and mobility.
into the world in March of 2003. When she was born she spent her first week of
life in the NICU because her body temps kept dropping. But soon she was
discharged and sent home with a clean bill of health. As time went on Alyssa hit
all of the milestones of a happy, healthy, growing child. Her family loved to
see her walk along the side of the furniture and to toddle around holding their
hands. She even managed to take 13 independent steps when she was 11 months old
with a huge smile across her little face.
At about 12 months
old Alyssa fell over on her bottom while she was cruising along the couch and
she started giggling. She was always a momma’s girl and preferred mom to
carry her, so when she wouldn't bear weight on her legs everyone just figured
she was being silly, everyone except her grandma Connie. She insisted we take
her to have her hips checked out fearing something might be wrong. 3 months,
hundreds of x-rays, and several doctors later we were given the news that Alyssa
had a genetic disease called Spinal Muscular Atrophy. The doctor who diagnosed
Alyssa unfortunately has terrible bedside manner and told us this was a death
sentence for our precious little girl. He said that with her type 2 diagnoses
she probably would never see 5 years of age, and we would just watch her wither
away in front of our eyes each and every day and nothing could be done.
It took us all some
time, but we eventually were sent to a web site for Families of Spinal Muscular
Atrophy (www.curesma.org) where we started to get our feet back under ourselves
again. We were given a lot of information and people we could talk to for some
understanding of the disease that was now a huge part of our lives. Yes the dr.
was right. There is no cure or treatment for SMA. BUT... it is NOT a death
sentence. (SMA is the number one genetic killer of children under the age of 2)
We truly believe it is all in how you choose to view it.
Miss Alyssa is now
10 years old and pretty healthy and definitely vibrant and active. She obviously
has a lot of medical concerns and is wheelchair bound since the age of 12
months, but she chooses to face each and every day with a smile on her face and
an extra one to share with anyone she meets. The day has yet to come that she
doesn't touch the heart of every person who meets her in some way. She
underwent a spinal surgery 2 1/2 years ago called VEPTR RODS. Part of SMA causes
scoliosis. The VEPTR rods are expandable titanium rods that they place in
your back to fix scoliosis and still allow your body to grow. Now Alyssa has
minor back surgery every 5 months that grow the rods longer to match her body’s
growth.
The down side to
fixing her back meant she no longer fit in the family minivan in her wheelchair
any longer. She was able to drive her power chair up into the van with a manual
fold ramp. Since that was no longer an option the family started picking her up
out of her wheelchair and placing her in the van and loading her chair by hand.
This worked fine for some time, but as Alyssa has grown so have her chairs.
Alyssa now weighs 115 pounds and her power chair no longer fits in the family
vehicle. So whenever Alyssa leaves the house her mom has to pick her up and
place her in the car and leave her power chair behind and use her manual
wheelchair.
Alyssa is getting
heavier the older she gets and mom is having difficulty lifting her in and out
of the car. Also by leaving the power chair at home Alyssa is giving up her
independence and mobility. She is unable to go and visit family and friends due
to the fact that no one can lift her. The family is hoping one day to be
able to purchase an accessible minivan for Alyssa, so that she will have freedom
and mobility.