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Housing Opportunities - People with Disabilities Mutual Self Help Housing Welcome Home Own In Logan Housing and Foreclosure Counsling Housing for Seniors Rental Housing

Thank You

saunders

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

 

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