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My name is Cindy. My husband and I have
four children. Our oldest
daughter, Ally, was born eight years ago with a very serious seizure
disorder. She can have as many as
15 big seizures a day, and as many as 40 small seizures a day. The seizures have not been responsive
to any medication and the doctors have no explanation for her condition. My husband and I were heart-broken as
we gradually learned Ally’s condition also meant she would never walk or
talk. She does not hold her head
up, and is tube fed through her stomach.
We love Ally very much and
we have taken every opportunity to help her. We have consulted all the specialists we could find in the
country. We have traveled to the Mayo Clinic in Minnesota and a therapy clinic
in New Mexico. She has been on countless medications. We’ve tried many
different therapies and diets. We travel to Logan, Ogden, and Salt Lake
frequently to see her doctors. Through all of this we have never been able to treat her symptoms or
calm the seizures.
I am happy to be her mother
and caregiver, but because her condition is so involved I am not able to work.
As you can imagine, our income barely keeps up with the bills. It is quite a
sacrifice to try therapies or adaptive equipment that insurance does not
cover. There are many things we
just cannot afford that our family and Ally would benefit from.
At eight years old Ally is
now quite heavy. My husband and I
share the task of lifting her. At our current residence Ally’s bed is in a room
placed away from the main part of the house and it is too big for the bedrooms. Her medical equipment is stacked
against the walls. It is hard to
move her from room to room because of the stairs and small hallways and
doors. Ally is often in her bed or
in another room when the rest of our family is together.
Thanks to Home Choice we are
currently working on building a comfortable house focused around Ally’s
needs. This is something we’ve
been working toward since we learned of Ally’s disabilities and the effort it
takes to care for her. In the
beginning we were very frustrated because we could not find a house that met
her needs, and building a new house with those needs was too much money for our
modest income. When we found Home
Choice we knew it was an answer to our prayers.
We need a one level house
with no stairs. We need extra space in the garage for the ramp in our van to
extend. Because of the wheelchair we also need larger doors and hallways. Ally needs an especially large shower
area that would fit her bath chair with ease. We need extra space to store the bath chair and other
adaptive equipment like wheelchairs and standers. We need to accommodate her
hospital bed and other medical supplies that she uses on a daily basis. We
placed extra outlets in Ally’s room by her bed to accommodate different medical
equipment like the feeding pump, suction machine, and oxygen. I wanted a sink close by her bed for
hygiene purposes and formula preparation. We will also put in a laminate floor in her room instead of carpet. This will be nice when moving her
equipment around the room. I was
also able to put Ally’s room adjacent to mine with an adjoining door. This gives me the ease of monitoring
her more closely at night. Her
room also has a four foot doorway opening into the
family room. This way I can watch her while I’m in the kitchen and caring for
her brother and sisters. When
she’s not feeling well and spending her time in bed I will be close to her at
all times.
Having a special needs child
has been a strain on us physically, financially, and emotionally. I believe it is important for people to
be aware, and really understand what a challenge it is… because we need help
and support. Our lives are so much
better when we know we are supported and we know ourprecious daughter is not
forgotten.
We have a modest income, and
the medical expenses are paid by this modest income. We would not be able to
have this wonderful home without Home Choice. Ally and our family is benefiting
greatly by Home Choice. There are not many programs in the state of Utah that
will help our daughter in this situation, and they are very hard to find. Please consider this when funding the
Home Choice program. It has made a
huge difference in our lives. Because of Home Choice we will be able to keep our special daughter at
home with her family where she belongs, and where we can take care of her in
the best way possible. Our
inconveniences may seem small to some people, but our quality
of life as a family is compromised by these little things. We are so grateful to the Home Choice
program for supporting us and helping our quality of life increase. I would be excited to see more families
like mine receive help from Home Choice.
Sincerely,
Cindy |
