BY JENNY MATTESON
Clarkston News Editor
‘She deserves this. All of her life, all she’s known is the hospital. White walls and white lab coats. All I wanted was for her to have her own space. It’s all about her, all about her. This is a healing room.?
These were the words Anitra Williamson uttered more than once as she toured her 11-year-old daughter Kiara’s brand new pink and purple bedroom, a gift from the Suite Dreams Project.
After Kiara and her family stayed at the Best Western Concorde Inn in Waterford for a week, they returned home for her big surprise this past Friday. When her wheelchair turned the corner to her new room, the 11-year-old threw her arms up in joy.
‘My room, my room,? she yelled over and over.
Kiara, a sixth grader in Kelly Berti’s class at Sashabaw Middle School, has Cri du chat Syndrome. Simply stated, she was born with a portion of her chromosome number five missing.
In combination, Kiara has Cerebral Palsy, Sickle Cell Disease, developmental delay, seizure disorder and severe gastrointestinal dysmotility disorder. She also suffers from numerous allergies including antibiotics and meat.
Because of so many medical complications, Kiara has spent 70 percent of her days in and out of C.S. Mott Children’s Hospital, 5-West, through the University of Michigan Health Systems.
‘When she gets a cold or has an infection, it’s an emergency,? said mom Anitra. ‘She goes into seizures or quits breathing. A cold can become a life or death situation.?
Anitra remembers back to when Kiara was born ? Aug. 1, 1993 ? three months early and weighing in at only two pounds, 12 ounces. She was born at North Oakland Medical and immediately transferred to C.S. Mott Children’s Hospital.
‘God was truly working his wonders for me that day,? said Anitra.
Kiara was 47 days old when she was finally able to come home. Since that day, caring for the young Clarkston resident has been a 24-hour job for mom Anitra and dad Rev. Daniel P. Williamson.
Kiara does not eat and requires 24-hour feeding and hydration through J-tubes. She takes 16 medications daily and is under palliative care (a service one step below hospice care).
‘We’ve decided we’re going to just keep trying and trying,? said Anitra. ‘That’s all we can do. She may live two weeks; she may live one month; she may live a year. We don’t know.?
Kiara’s last trip to the hospital ended on Dec. 2.
On Dec. 3, the Williamson family received the surprise of a lifetime.
Suite Dreams was contacted by nurses at C.S. Mott Children’s Hospital regarding Kiara. Anitra said the nurses knew the family has recently been ‘blessed by God? with a home, but had little time to settle into the new environment.
So Suite Dreams Project and volunteer Kim Dalen, of Sterling Heights, decided to brighten the little girl’s world.
Suite Dreams, based in Rochester, sprung from the minds of Kay Ponicall and Kris Appleby. The two women, with the backing of the non-profit General Sports Foundation, began their first project in March 2001.
The project’s mission is ‘to bring comfort and joy to children affected by serious medical conditions by creating healing environments in their homes, in hospitals and in our communities that improve their quality of life and speed recovery.? The program utilizes volunteers, designers and artisans to create ‘healing environments.?
When Project Leader Kim Dalen first saw Kiara’s room, she was overpowered by the amount of ‘stuff.?
‘It was just wall to ceiling packed. Everything was in boxes, you just didn’t know where anything was,? said Kim. ‘There was no rhyme or reason to anything. All of her medicine, everything was in one room.?
The crew of volunteers officially began work on Kiara’s suite on Jan. 24, and completed everything in one week.
‘Kiara picked out the pink and purple and she told us she likes Bratz and Barbies,? explained Dalen.
After the week of work and planning, the changes to Kiara’s room are extensive:
A doorway was created between Kiara’s bedroom and the spare room next door. Workers widened all the doorways into the two-room bedroom suite and bathroom to accommodate Kiara’s wheelchair. Shelving and storage units were built into the closets in the bedroom and sitting room.
Carpeting, paint and decorative wall flowers, drawn by Clarkston High School students Julie Hemphill and Allison Cumper, completed the overall look.
‘I wanted to do something for someone that was selfless for me,? said Cumper. ‘I was excited to participate, but concerned I would mess something up.?
In the sitting room, a wheelchair-accessible, wall-mounted desk was built by a window. The newly built closet was organized with all of Kiara’s medications and supplies. Additional furniture included a comfy loveseat and wide-screen television, so mom Anitra can take a break while Kiara is resting.
In the bedroom, dressers were built into each corner of the room and flowers were painted on the walls to give Kiara her ‘very own garden.? Her clothing and many pairs of shoes were organized in her newly designed closet.
The highlight of the room is the youngster’s first ‘big girl? bed (without any side railings or plastic covering) which includes a trundle bed underneath for mom and dad. The Williamsons have been sleeping in Kiara’s bedroom, taking turns and together, for a couple years now.
‘It’s hard,? said Anitra, ‘but we made the sacrifice for her. She needs 24-hour surveillance.
‘Her bed was so important to her. She said she felt like she was in jail and she hated it.?
In the bathroom, workers installed a wheelchair accessible sink, lower mirror and handicap-accessible toilet. A slip-proof flooring and fresh paint completed the room.
‘Normally we don’t do this amount of construction,? said Dalen, ‘but Carolyn’s husband, who owns a construction company here, donated all of the services. He’s been absolutely amazing.?
Carolyn and Jerry Hemphill, owners of J.E. Hemphill, Inc., became involved with Kiara’s bedroom thanks to a mutual friend ? Dalen’s sister asked if they would be interested in the project.
‘We’re happy to have been a part of this,? said Carolyn Hemphill. ‘This is all because of Kim.?
And the donations just kept coming for the project. To turn the beautification of Kiara’s suite into a functional living environment, Suite Dreams installed a brand new surveillance system throughout the home. The work was provided by Protection One in Farmington Hills.
‘Now, whereever the mom is, the security cameras allow her to go into another room in the house and still watch Kiara,? said Dalen.
Girl Scout Troop 681 in Shelby Township added to the renovations by donating gift bags full of new toys and clothes for the disabled Clarkston youngster.
‘They wanted to do something to help, but the construction was being handled,? said Dalen. ‘So we told them that she likes Bratz and Barbies and they sent around six gift bags packed full.?
‘I don’t even know how they got this from what was there,? cried Anitra after seeing the final results. ‘There aren’t words for this. There just aren’t the words.?
Family, friends and volunteers spent a couple hours discovering the remarkable new living space. Tears, hugs and kisses flowed between strangers brought together by the needs of one little girl.
‘You have so much fun working, The more you do, the better you feel, the more you want to do,? said Dalen. ‘You meet great people. You get great memories. You bond to people.?
Anitra said she will take the ‘blessings and training? she’s received to move forward and help others.
‘My 84-year-old grandmother always says, ‘God don’t put more on you than you can bear,?? said Anitra. ‘I felt like he chose me to do this. From the day (Kiara) was born, I had a bond with her.
‘He must be preparing me to help others. He’s preparing me for something and this is just one more step.?
‘I can’t say thank you enough to these wonderful people,? Anitra concluded, tears once again streaming down her face.
For more information on Suite Dreams Project, please call 248-601-2200 or visit www.suitedreamsproject.org on the Internet.