Walls of Hope is Partnering With
Ruso Development Inc. and The ILC Foundation
to Help a Very Special Family!

Walls of Hope, Ruso Development Inc and The ILC Foundation.
invite you to be inspired to join in this heartfelt project and
help make A Special Room for Spencer a reality.

The ILC Foundation received a letter request for support (please read below) from a family in Oakville that have two special needs children. While a request of this nature does not fall within the charitable guideline of Foundations, some special people have determined an outreach initiative in the spirit of a culmination of “business meeting community”.
Rob Ruso, President of Ruso Development Inc. has taken the lead, donating his time and expertise as one of Oakville’s top Builders. In the eyes of two special needs children living in Oakville, Rob Ruso is the KING OF KINDNESS!

Your Help is Needed to See this Project to Completion.
Donations to support this project plan can be made at:
 any TD Bank under the account name: Spencer’s Room/Ruso.

Project Scope:
The scope of this project involves adding a small addition to the existing main floor family room, which is at the rear of the family home. This will allow enough space for the family room to be transformed into a bedroom and adjoining custom bathroom to allow for Spencer’s special needs.
For fire safety, there will be an exterior door in the bedroom with a permanent ramp for ease of taking Spencer onto the backyard deck.
Moving the existing main floor family room to the already finished basement will result in the family’s additional need to have a stair-lift so that Spencer can enjoy family occasions with cousins and visits with friends.
Traditional funding sources for this equipment stipulate that the purpose of a stair-lift be to take the family member to bedroom/bathroom only. For this reason, we have included the stair-lift on this project plan.

Visit: www.rusobuild.com  to view the project specifications
For additional information, you can contact Walls of Hope, Ruso Development or The ILC Foundation

A Fundraising Event will take place June 4th (8pm) at Shoeless Joe’s Restaurant Oakville, 2499 Prince Michael Drive (Dundas & Prince Michael Drive)
Live Music by a Variety of Awesome Bands – Silent Auction – Door Prizes
Tickets $20.00 at the door

We are writing your foundation in hopes you can assist our family in our time of need. We appreciate the fact that your foundation is primarily focused on improving the life of children and adolescents that are suffering with chronic pain diseases but still hope that perhaps you could provide us with some assistance. We are humbly submitting our story for your review.

We have two special needs children. Our oldest child Spencer, was the surviving twin of a difficult pregnancy. Not only were we grieving the loss of a child, but we had to cope with a diagnoses of Cerebral Palsy as well. The formal diagnoses came at 15 months of age and was totally unexpected. This was after waiting a gruelling seven months for an MRI. As a result, Spencer has significant delays cognitively, emotionally, physically (gross and fine motor) and with speech development. Our world changed forever. The dreams we had for our family would never come to pass. Instead of spending quality time playing sports together, visiting amusement parks, going on vacations etc. we would spend many an hour going from one appointment to another. We met health care professionals from all walks of life who treated our child like a number and not an individual. We tried traditional therapies but had little or no success.

It became very clear that we had to take matters into our own hands, meaning we had to explore alternative therapies. We wanted Spencer to be the best that he could be given his circumstances. For years, there was extensive travel to Toronto for different therapies, which were somewhat successful. However, the exuberant costs, the stress, and lack of sleep all became unbearable, and we had to take a break from the insanity. There was little, if any, normality in our lives. During this time, there was no choice but to reduce my hours to part time and give up a full time salary. This was a huge financial strain on us but became worse when all part time employees were terminated. Now we were left with one income and the added stress that goes along with it.

In the midst of all of this, shortly before Spencer turned four, our beautiful daughter, who is now nine, was born. She had some health concerns as a newborn, including colic and digestive issues but for the most part was healthy and met her milestones early. Little did we know that her health would change after an accident at 11 ½ months where she fell off a step and hit her head on a ceramic floor. Two weeks following, she showed signs of petit mals seizures. Could we handle yet another blow like this to our already stressful home environment? It was incomprehensible that we had to deal with all this with no idea how.

Our daughter was diagnosed with epilepsy shortly after. It had a significant impact on many areas of our lives. From then on, we went on a roller coaster ride trying to find the right meds that would control her seizures. There was hope with one medication at the age of three at which time we were advised could be eventually eliminated if she were to remain seizure free for a year. Unfortunately, just one month shy of a year the medication stopped working, which was around the time she started school. Another devastation for us. It all seemed so unfair for our children to be struggling like this.

In the past several years not only did we have to become strong advocates for our children, but our lives have become a constant battle for answers about our daughters condition due to the severity of it. Her seizures continue daily. All this while trying to meet the needs of her older brother with respect to his health, therapy, education, equipment needs and so on. Test after test failed to bring any relief to the situation. Again, we’ve had no choice but to turn to alternative therapies and remedies to help her. This has been a very costly venture, but how can we give up on our children? There is always hope even though we are always given the worst case scenario.

In the past, we have done many fundraisers to help offset the cost of therapy for Spencer. It has been very rewarding but at the same time extremely exhausting. Parents of special needs children have no choice but seek help from their community even though it is the last thing they want to do. The services are few and far between from both the provincial and federal governments. The reality of it is that unless you live at or below the poverty line, families are essentially on their own to manage the financial responsibilities associated with having children with special needs. Although our household income is decent, it isn’t enough to keep us from having to take out a second mortgage. I have been unemployed for 10 years out of necessity. There are always phone calls from school relating to health issues where our daughter is concerned, and I can never be far in case she falls and hits her head or has a prolonged seizure necessitating a special medication. This is aside from the many appointments our children still need to go to.

Spencer requires many pieces of equipment including, but not limited to, a walker, stander, foot orthotics, bike, and various bars for the bathroom. We have yet to purchase all of this equipment due to the exorbitant costs involved. We had hoped to buy him a bike for therapeutic reasons and to give him some independence, but the quote was $4,400 for a specialty bike. Also, in the near future we will have to make accommodations to our van due to the strain of getting Spencer and the wheelchair in and out. This is the problem we keep running into. Costs for equipment for people with physical disabilities are extremely high. This does not take into account the expenses with travel, specialty diet foods, adapted toys and so on. Along with the financial strain, we have been experiencing our own deteriorating health, such as back problems. We have put ourselves on the back burner. Seeing our children face the everyday challenges they do breaks our hearts. I’m sure we speak for all parents when we say we only want the best for our kids, physically, mentally and emotionally.

Although we have some extended coverage for some forms of alternative therapy, it hasn’t been enough to cover the number of visits that our daughter has had with a naturopath, acupuncturist and osteopath. Just recently we have put her on a very restricted diet that requires eating mostly organic. She must also take several supplements. All this adds up.

As Spencer gets older and bigger, we are finding it increasingly difficult to manoeuvre him up and down the stairs where his bedroom and bathroom are located. This was even more trying for us after he had two foot surgeries that required us to carry him up and down for six weeks each time. Prior to that he was able to take the steps but only with our assistance by holding him from behind. He is able to do this again but still requires assistance with every aspect of everyday living. There are numerous lifts and transfers involved for his care. It has taken a toll on our bodies and have now had to seek osteopathy, acupuncture and massage therapy treatments. Traditional physiotherapy has been ineffective. More expenses.

We have received quotes for a stair lift. Our staircase is spiral and therefore a lift needs to be custom made. The quotes have ranged from $12,000 – $16,500. Although, a stair lift would be a good solution, it is only a temporary one. The life of these is 10 to 12 years. Our bathroom would still not be renovated even after spending that money. Also, should the stair lift break down and require replacement parts, we would still need to transfer him up and down on our own.

After much thought, we have decided the best option for us now and in the long run, would be to renovate our main floor. An existing family room would become a bedroom and the attached deck could accommodate an accessible bathroom for Spencer. At this point we have not received any quotes. We are still waiting for contractors to come to our home. We realize it is going to exceed the cost of a stair lift. However, we feel this will be the safest and most beneficial solution. Mornings are very stressful when I have to bring Spencer down the stairs while keeping an eye on our daughter at the same time. Her seizures occur several times each day, and first thing in the morning is the most likely time that it happens. The stress is unbearable. With Spencer’s bedroom and bathroom on the main floor, this whole scenario would improve.

Although Easter Seals and The Ontario Federation for Cerebral Palsy does fund some equipment, they do not fund renovations. The Ontario March of Dimes, President’s Choice Children’s Charity, Jennifer Ashleigh Foundation and other such charities do not provide financial assistance if your combined family income exceeds $65,000.

You now have a bit of an understanding of what our lives are like. Even though we have a very stressful life, our children remain our pride and joy. Despite all the hurdles they have had to overcome, they remain happy and optimistic about their future.

It is for this reason we are requesting any assistance from the ILC Foundation. We understand how difficult it is to make decisions as to which families you can assist but we hope that you will give our family serious consideration.

Sincerely,

Mom & Dad of two fabulous children!
(Names have been removed for privacy)