was born Oct 29, 2004. She weighed 7lb 8oz. Very healthy
She has 3
sisters Ellita (21), Jordan (16), and Keyana (14). I
figured this was my last child so I stayed home with
her. I held her all the time. It had been 13 yrs since I
had had a child and you kind of forget at what age they
reach their milestones.
At her 4
month well child check up her doctor noticed she wasnít
moving a great deal so she set us up with a
Developmental Behavioral Pediatrics doctor.
an assessment on her and classified her as hypotonic
with development of Ĺ month old. Further testing was
needed and physical therapy started.
through MRIís of brain, blood tests CAT scans. No one
could give us an answer.
didnít do well on trips to doctor apts. and would always
start crying. So we started therapy at home with the
Washington Elks therapy program for kids with Becky
On June 3,
2005 we had our first apt with a pediatric neurologist
Dr. Al Mateen and he told us he thought it was Spinal
Muscular Atrophy. We had no idea what that was or had
ever heard of it. We figured ok, we can deal with this
and asked him what we were looking at. His words were ď
life expectancy is shorter than normal.Ē OK that wasnít
that bad. Normal is what 80 yrs so what 40 yrs old.
Little did we know that it was an infantile death
home and I called our therapist. She knew another
therapist who worked with a family who had a daughter
with SMA. Sunday June 5, 2005 we met with them for
lunch. The Mclays were so helpful and hopeful. We had
cried all weekend with the thought that our daughter was
us about a drug trial in California with this medication
with Dr. Ching Wang. Monday (June 6, 2005) I called and
had Kayleigh enrolled pending final blood work results.
It was the longest wait Iíve ever had.
everyday wanting results. I knew time was running out.
The sooner we tried something the better chance we had.
2005 we got the results confirmed that it was indeed
Spinal Muscular Atrophy.
I had our
therapist print me info on everything she could find. We
were under the impression that she would just be in a
wheelchair. Little did we know that they classified
Kayleigh as a Type 1, the most severe form with death
knocking at our door.
I got custody of my niece and nephew who where 3 and 4
when all this started.
chair started with our first trip to California on June
30 to enroll her.
WE NOW HAD
SOME HOPE!!! And a lot of doctors apts. With all these
specialists. Pulmonology GI, Neurologist, OT, PT, Sleep
study, and swallow study.
know how we were going to afford all this and still
maintain a normal family life.
study went good, no problems. We started water therapy
which was great. Kayleigh could actually move her legs
in the water.
realized that the reason why Kayleigh didnít do well in
the car seat was because of her muscle weakness and she
was having difficulty breathing.
So no more
car seat. How scary is that to not be able to put your
child in a car seat. Accepting that was pretty hard but
she would stop breathing.
went to the Genetics doctor who told us that it was a
genetic defect that my husband and I passed on to her.
Oh my god
this is our fault. Rationality tells you no but you
canít help but blame yourself. The guilt with that is
enormous. You feel as though God is punishing your child
for your mistakes in life. Once you get a grip on this
you realize that itís a blessing from GOD, A MIRACLE. So
what if sheís different or wonít be here very long, we
cherish every second we have with her.
daughters were extremely amazing through all of this. It
made them grow up real quick and learn to cherish what
they have. They would take turns going to apts. with me,
wanting to be right there with Kayleigh every step of
the way. Jordan and Keyana put their lives aside to help
kids today are self absorbed and I canít say mine
werenít before this, but that changed the day when we
found out Kayleigh was sick. They take time off of
school to help with our trips to California.
was having a hard time gaining weight so we had a
swallow study done. We didnít see the point since she
was drinking her bottles and eating baby food. I did
have concerns because she never increased the amount
that she drank. Oct 13 we had the swallow study done and
found out she micro aspirated. They put us in the
hospital to place a NG tube in and do training.
was worse than the day we got the diagnosis. This was
the day that it became a reality that something was
really wrong. Everything else was just something you
read about on paper. The next day we had a gastric
emptying study which confirmed she also had GERD. Now we
have an NJ tube and she is on continuous feedings. The
doctors said she needs a GT and a fundoplication. We
went home on Sunday to think about all of this. It was
now sinking in that our lives were going to be
different. We were home for 5 days when Kayleigh got
sick with respiratory issues.
It was a
long hospital stay with pneumonia and our first
introduction to bipap. Boy, did I hate everybody at the
hospital who was doing this to my little girl.
Kayleighís 1st birthday in the hospital. It wasnít much
to celebrate at the time. She had her surgeries and was
released from the hospital the day before Thanksgiving.
is a struggle and will be a struggle to give Kayleigh
the best life possible.
phase of the trial was a 6 month double blind phase with
Hydroxyurea or the placebo.
It took us 9 months to get to open label with pneumonia.
I feel the
medicine is saving her life. We were told it was a very
progressive disease. But the hopes with the drug is to
halt the cells from dying off. So far it seems to be
working. Februaryís hospital stay was 3 weeks, Aprilís
was 2 weeks, Mayís was 3 weeks and we almost lost her.
She got sick in a matter of hours and was airlifted to
Mary Bridge. We had a 2 hours drive. That was the first
time Kayleigh and I had been separated. I had never left
her side until then. By the time I got to the hospital
and they let me in to see her, she was hanging on by a
thin thread. IVís and blood draws were very hard. We
stopped counting pokes at 30 on her upper body. We had a
port a cath put in to help with this. She actually was
in respiratory failure many times with this hospital
stay. Weíve had right upper lobe atelectasis, lung
all the time and she is on bipap at night. In May all
the doctors wanted to trach her because she has a
critical airway due to muscle weakness and not being
able to open her mouth very well.
with the trach at the time was quality of life and being
vent dependent. She was just starting to talk and they
couldnít guarantee it. So we told them NO that we
werenít ready for it. We studied the disease and planned
for the steps that we were going to go through and the
trach wasnít the next thing. We got better and went back
to our base line.
we do CPT with the vest to keep her lungs clear. Suction
nonstop. Feedings by pump. Speech therapy along with
sign language. Occupational therapy and physical therapy
to help with home and muscles. Trips to California which
are very expensive. Fund raising to help with that. But
as her care gets more and more its gets harder and
harder to do.
good family support and was approved for 8 hrs nursing a
that a struggle to find good nursing. It was not as if
Kayleigh wasnít willing to let anyone help. She had
major trust issues which was very understandable.
great for us, Kayleigh was getting stronger and starting
to talk a lot more. We went to the zoo a couple of
times. We donít get out much because it takes to much
time to prepare for trips, even to go shopping. Also
Kayleigh doesnít have a lot of reserve energy and gets
tired so easily.
the summer Kayleigh started holding her head up for
short periods of time.
she say up for 5 minutes all by herself. It was a
MIRICLE. Dr. Wang actually said she was the strongest
Type 1 heís seen. She was talking more and more each
She is so
smart too . She can count to ten in Spanish and 20 in
English. Kayleigh knows her ABCís, shapes, colors. Over
200 signs and can spell her name.
to help with all her care. She can suction herself. She
loves to press the syringe with her machines. Kayleigh
knows about her cough assist, oxygen, bipap, food, port,
lungs, and all.
2006 we celebrated her 2nd birthday. Oh my gosh! We made
it. It was a huge milestone and we did it. Kayleigh was
so tired when the party was over.
hard shopping for her. I find myself getting depressed
about it a lot. With clothes they have to be real thin
because she gets hot real easy. Toys she canít play with
a lot of them a lot because she canít lift them. There
are so many things she canít do. I wonder what she
thinks about the world around her.
she think when she sees other kids running and sitting,
eating and playing while she just lays there and
watches. She seems to be a very happy girl but I always
wonder. I would give my life just to make hers even a
little better. For her to even have one day of being a
typical 2 yr old. To be able to eat food, sit up, run
and jump, throw a ball, play Barbies and dress them
this be that any child should miss out on these simple
things. Itís not fair.
2006 Kayleigh got sick again and we took her to the
hospital. I knew she was getting sick.
Kayleigh she is either well or very sick. There is no in
between for us. Dec 22 respiratory failure and a trach
tube surgery because the airway is too risky. If she
were to crash any where but the ICU she wouldnít make
it. They used every technique and trick to intubate and
it took them 2 hours to do it.
surgery went well. I think it was the right time for us.
She wears her passy muir valve and can talk up a storm.
She can breathe so much better now. The doctors said her
airway was so small it was like breathing through a tube
the size of an ink pen.
gaining weight really good now since we had the G-Tube
put in. she is now 30lbs 4 oz. and 35 Ĺ inches long.
She came out of the hospital on Jan 3, 2007.
She is so
amazing in her determination and her will to live. She
is happy and always laughing.
daughter has saved her life many times when she gets
plugs. Keyanaís 14yrs old and I trust her so much with
always excellent with her.
dad are great and I couldnít do this with out my mom.
trach we got approved for 12 hrs a day of nursing and
finally found some good nurses and Kayleigh is finally
much sorrow as this has brought our family, it has
brought us to hold the joy of having Kayleigh in our
met some of the most amazing and wonderful people that
care so much.
our society today seem to be so self absorbed in their
own life. But when a child is ill their hearts open up
and compassion comes out. People we donít even know have
reached out to help us with our trips. Itís a big
financial burden. Weíve had our local paper run articles
on Kayleigh. My husbands employer TMI Tubafor
Manufacture Inc also did a pay roll deduct and they
very dedicated to the research study to help find a
cure. It may not save Kayleighís life but hopefully it
will help to save the life of a future child that
struggles with SMA.
2007 we went to the hospital again for 10 days. It was a
lot easier with the trach and it made recovery faster
with easier access to the lungs.
hoping to get to California again soon.
takes 3 days and it takes 3 adults to take all the
machines with us to California.
airlines and TSA know us pretty well now so going
through security is getting easier. We have 3 more trips
(6 months) and we will be done with the study but until
the medicine is FDA approved we will always have to go
to California to get the medicine.
costs anywhere from $700 - $1000 dollars. Our
fundraising efforts are limited because Kayleighís care
takes so much time now. We donít know what weíre going
to do when the money runs out.
has any suggestions about this, we could use all the
help we can get.
struggle with transportation issues. We need a handicap
van but canít afford it. A van was donated to us but not
in very good shape with the way to tie down her chair or
ramps to load her. We have to lift her up by ourselves
and my shoulder is now really messed up with a pulled
helps out a lot. Aunt Sue is excellent about everything
with fundraising and trips to California. Nana gives
Kayleigh all baths and helps with everything else.
work together as a family and no one is selfish about
it. Thereís no time for it. Nobody gets left out and we
all take care of each other. I think itís the only way
we can do it. We are so lucky to have that support.
never enough time in the day and it always feels like we
didnít get enough done but we try to look at the
positive side about what we did get done.
I wish I
had the time to tell you every moment of this beautiful
babyís life but I donít. Iím to busy enjoying her.
I get depressed about what we donít have all I have to
do is look in her beautiful face and thank GOD for the
blessing that he gave her to us. And she is a miracle
and we are the ones blessed to be able to be apart of
decided we werenít going to sit at home and took her to
ride the Mt. Rainer Scenic railroad train. Jordan and
Keyana went with me. We got up at 6:00 am to start
getting ready. Train left 11:30, Kayleigh loves to go
places. It was a fun day watching her facial expressions
and making train sounds. By the time we got home she was
exhausted and slept till the next day.
motorcycles too. We have a couple quads and dirt bikes
and we put her in a pack and give her a ride on them.
She makes the motorcycle sounds and tells us to go fast.
She doesnít like to take turns very well.
2006 we took her to Point Defiance zoo in Tacoma.
Another long day. All the uncles and cousins went.
Kayleigh loves animals so much and making the sounds.
The whales were her favorite.
trying more and more to get her out of the house and not
to let her disability keep us home. Itís hard to try and
figure out things to do that she can be apart of. Most
everything has to be stuff visually that she would
enjoy. Any fun ideas for this would be great.
to watch Dora and Elmo movies, playing with her
magnadoodle and Barbieís. She has her own dvd and ipod
(loves music.) Her favorite thing to do is to go in her
sister Keyanaís room and listen to music as she loves
spending time with all the girls.
great about letting her be apart of that. It works to
Kayleighís advantage because if she was a typical 2yrs
old I think Keyana would always be telling her to go
away but instead they are so close. They do play argue
all the time. Kayleigh keeps up with her pretty well.
Jordan is here she canít get enough of her sister
either. They never deny attention which makes the bond
that they have even more special.
Jordan and Keyana have really good friends too who seem
to understand our family.
to Rochester in August and Keyana had to start a new
school. I remember the first girl that came over to the
house. When Keyana gets home from school the first thing
she does is play with her sister to give me a break.
When they got off the bus and Keyana did this they
didnít understand why she had to. To her it was all
about hanging out together. Keyana told her friends this
is what I want to do not have to do. They are no longer
friends. It seems that one of the things they base
friendships on is how well they respond to Kayleigh.
Whether or not they have comparison and understanding.
friends Jordan and Keyana pick will be life long friends
for them. They are great girls.