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| Chloe with Stuart Smith and us in front of the home on the day of the key ceremony. |
Oh boy. Where to start with this amazing part of our lives! I guess I will share the article that was in the Standard Examiner on the day of the key ceremony and go from there....
Area Have A Heart homes go to families of children with disabilities
Monday , July 14, 2014
SOUTH OGDEN — A $1 million park under development in Syracuse, and now a new South Ogden home for 7-year-old Chloe Bennett and her family.
The keys to two Have A Heart Homes -- built by local contractors to help meet the needs of low to moderate income residents -- will be turned over Tuesday to two families, each with a child experiencing significant medical issues.
Officials from the Northern Wasatch Association of Realtors, the Northern Wasatch Home Builders Association and the Have A Heart Home Foundation are responsible for making the homes available for a significantly reduced cost.
One home is located in Layton, the other in South Ogden.
Michael and TaraLee Bennett will occupy the heart home in South Ogden at 96 South Country Club Drive. The home, with 1,604 square-feet of finished living space, was built by Mainline Construction and was recently featured in the Parade of Homes, according to Stephen G. Handy, spokesman for the NWAOR.
In 2007, the Bennett’s daughter, Chloe, was diagnosed with severe brain damage believed to have occurred in utero. She was four months old.
Chloe, now 7, is wheelchair dependent, non-verbal and requires constant care and treatment, TaraLee Bennett said.
The Bennetts reported in their application that their current home does not meet their needs to care for their daughter, who is having to sleep in the family room.
The city of Syracuse, through private donations, is in the process of helping organize an effort to develop Chloe’s Sunshine Playground park at 1979 S. 1900 West .
The park, which has received over $200,000 in donations, including a $42,000 donation from the Davis County Gala in 2012, is to offer unique playground equipmen for children with disabilities, and all other children, to be able to play together.
The Layton home was made available by the Have A Heart Foundation and will be occupied by Michael and Nicole Kuculyn.
The family, formerly of Seattle, are humbled and grateful for the 2,833 square-foot home at 415 Weaver Lane, Handy said.The lot for the home was donated by Layton City, with the home being built by Nilson Homes of Ogden.
In January of 2008 the Kuculyn’s second child was born prematurely and diagnosed with Cerebral Palsy.
“Both of our children, Hannah, 7 and Ben, 6, are thriving, although Ben is confined to a wheelchair,” Nicole Kuculyn said in an application to be considered for the home.
“Ben has multiple therapy sessions a week and we need a single-level home in order to care for our family,” Kuculyn said.
“We have forfeited a dual income in order to better care for our son,” she said.
”We’ve been doing this for many years. It’s one of our most important outreach initiatives,“ Northern Wasatch Association of Realtors President Mark Shepherd said of the Have A Heart Foundation.
"At these symbolic ceremonies, we literally turn over the keys to the family selected to own the home,” Shepherd said.
Since its inception in 1998, the Have A Heart Foundation has been able to award 22 homes at a reduced rate to local families, Handy said.
Also, for some reason I cannot figure out how to embed this video, but here is a link to a video about the Have a Heart Home Program.
http://nwaor.com/index.php?option=com_content&view=article&id=37&Itemid=45wing
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I know. Completely humbling, amazing, and truly life changing!
So let me back up a bit. I knew my cousin, Marianne, helped with this organization and I thought it was so cool they helped people with special needs! I never thought we would qualify, I guess I assumed it was for people in more destitute situations than we are in. But I still thought it was just amazing! Then in the spring, she contacted me and said would you be interested? I think you should apply. After finding out the qualification guidelines, I realized we actually would qualify! So we didn't even consider the South Ogden home initially because we preferred to stay closer to where we already were, so we applied for the Layton home. It was a cute little rambler with great freeway access and only a few minutes from my mom's house and RIGHT by Chloe's school! Here is a copy of our application letter. I couldn't believe how hard it was to write this letter asking to be considered for this program.
To Whom It May Concern:
In 2007 when our daughter, Chloe, was born and was found to have significant medical issues, the quote by Anais Nin, “Life shrinks or expands in proportion to one’s courage,” became our mantra. As a couple we decided that we would not shrink in the face of this great challenge, but find and cultivate the courage required to expand and grow on our unexpected journey. Facing life with this attitude made and continues to make all the difference! We have been amazed at the people we have met and opportunities we have had as a result. It is with courage that we are now reaching out to be considered for a Have a Heart home.
When she was 4 months old, it was discovered that Chloe had severe brain damage that was believed to have occurred in utero. She then started having a very rare type of seizure at 6 months old. She was given the diagnoses of cerebral palsy and West syndrome. From that point forward, our lives were forever changed in every way. Chloe is now almost 7 years old and though her condition is stable, her disabilities are severe. She is wheelchair dependent, non-verbal, requires a g-tube for nutrition, and continues to have neurological issues that require constant care and treatment. She is a beautiful child who spreads joy wherever she goes! She attends a special class at Heritage Elementary in west Layton and enjoys associating with her peers. She is the inspiration behind Chloe’s Sunshine Playground to be built in Syracuse this summer. Last November, we welcomed our second child, Sam. He was born a month early and had significant health issues that required a 3-week NICU stay. He does have a congenital heart defect that we continue to monitor, but that is expected to heal without lasting effects. He is currently thriving and doing well.
Although we consider our children our greatest blessings, their health conditions have caused tremendous financial burdens due to the expense of treatment (doctor visits, medications, equipment, surgeries, special formula, and hospital stays) and also because full-time employment has not been possible for both of us for the majority of the past 7 years in order to meet Chloe’s needs. Our current home does not meet our family’s functional needs, as there are only two bedrooms and it is not wheelchair accessible. Chloe sleeps in the family room and there is not enough room for our family to sit together around a kitchen table. Although we are tremendously grateful for the home we have, when we heard of your organization, we thought our family might be the type that could qualify for your wonderful charity.
Thank you for your time and consideration. Please, if there are any questions or additional information needed, contact either one of us at any time.
Sincerely,
Michael O. Bennett “Oby”
TaraLee Bennett “Tara”
That process was a bit heartbreaking, as we thought the Layton home would be ours a time or two, then ultimately found out the only other qualifying family got that home. I was sincerely grateful for them, but quite bummed for ourselves. Then we decided, just out of curiosity, to go see the South Ogden home. It was still under construction at the time, but as we came down the hill and saw it, it was as if the clouds parted and angels descended and started singing. We LOVED this home from the instant we saw it! Oby and I both almost immediately said how cute it would be at Christmastime. I thought later why that was what we both thought of and I think it is because Christmas is about HOME and this home is just SO HOMEY! It is just so special. We realized that even though South Ogden is further miles from where Oby worked in Salt Lake City, because it has better freeway access, it would actually take Oby almost exactly the same amount of time to get to work. So location was not an issue and that was that for us! So we met the builder, Stuart, who happens to be one of the kindest people I've ever met and, it turns out, related to one of my best friends growing up, Mandy (Lovell) Parry. So....long story short, we applied for the South Ogden home and were accepted with the major condition of selling the home we currently owned.
My cousin, Penny, jumped on board and helped with that. It was SO stressful and we had a couple sells fall through, but ultimately the cute couple who bought our home were the perfect fit and he, it turns out, is a distant cousin of mine, which is just perfect since that home had almost always been in our family in one way or another. So it was perfect! And just like that we became the owners of this beauty.
We love it! It is HOME. It is perfect.
Pictures of the entire home are here:
https://www.facebook.com/tara.o.bennett/media_set?set=a.10204353155246309.1152683571&type=3
The Northern Wasatch Home Builders Association held a key ceremony at the home before we moved in. SO many people were there to celebrate! Stuart, the builder, talked about how angels had helped him in the process. He said when it was in the Parade of Homes (oh yeah, it was in the parade of homes!), a woman who came to see it sat down and stayed for hours. He kept asking her if she had questions or needed anything. Finally, she said it just had such a special feeling about it and she wanted to stay and enjoy that feeling. It is so true! That is what makes it a truly special home, the feeling, and I know it is because angels helped build it and angels reside in it because angels are always around Chloe! He said someone told him he was a hero and he talked about how, no, we are the heroes as Chloe's parents and he was glad to help us out. Then they had me say a few things and I assured everyone that Stuart IS a hero to us! But that Chloe is the true hero. She was so smiley and giggly at the key ceremony, yet the night before she had been up crying in excruciating pain from leg spasms. But she puts a smile on and radiates sunshine everywhere she goes. That's a hero in my eyes! It has been such a special experience, I am grateful beyond what I can put into words.
