Charity started by Middleport family has given 300 beds to people in need

Beds from Brian also has provided more than 1,000 pillows as well as bedding and pajamas

Doreen LaFleur of Middleport stands by a framed logo of the charity the family founded to honor their late son Brian, who died in 1993 at the age of 2 ½ from a rare genetic disorder.

MIDDLEPORT – The Genesee-Orleans Ministry of Concern was the first cause to benefit from Beds from Brian, a charity founded to memorialize a little boy born with a very rare genetic disorder.

James and Doreen LaFleur of Middleport were expecting their second child in September 1990. They already had a son Christopher, 3, and were looking forward to welcoming a new member of the family.

They were not prepared for what happened.

“After what seemed like a routine pregnancy, Brian was born with an extremely rare genetic disorder called Robert’s Syndrome,” Doreen LaFleur said. “His body did not develop normally, and Brian was born with hydrocephaly, cleft lip and palate,  no arms and club feet, with development of only the brain stem.”

She remembers his big beautiful blue eyes.

Doctors were unsure how long Brian would survive. At the time there were only about 20 documented cases of the syndrome in the previous 30 years. They advised the LaFleurs they could leave Brian in the hospital, place him in a special facility or bring him home. They chose to bring him home.

Christopher was 4 when Brian was born and he automatically felt a special bond with his little brother. He held him, hugged him and loved him.

“He never seemed to notice Brian looked different,” Doreen said.

She said they took Brian everywhere they went – to family get-togethers, grocery shopping, road trips, Burger King and even on the boat in his tiny life jacket.

Brian only lived 2 ½  years and never weighed more than 13 pounds. He died April 13, 1993 at home, in Doreen’s arms, with her husband James at her side.

“Brian never smiled or talked, crawled or walked, but he did something more important,” Doreen said. “He taught us about compassion and unconditional love. Brian touched the hearts of all who knew him and we are truly blessed to have had him in our lives.”

After Brian’s death, the family searched for a way to give back in some way for all the wonderful kindness and support they had received, from family and friends, and from the community.

It would be at a church service at St. Stephen’s Church in Middleport that the family discovered how they could help underprivileged children and honor Brian’s memory.

A guest speaker at the church that day was none other than Sister Marian Adrian of Albion, a Gray Nun and one-time director and supporter of Genesee-Orleans Ministry of Concern.

In talking about her organization and its mission, she stressed their need for “Beds, beds, beds,” Doreen said.

“Then I knew that’s what we could do, and Beds from Brian was born,” she said.

Then followed small fundraisers with family and friends – chili parties, picnics, comedy evenings, roller skating parties and cornhole tournaments. Each year, events got a little bit bigger, until Doreen didn’t know if she could keep doing it, while working full time at First Niagara Bank in Lockport.

“While I was working, I tried to keep the charity manageable, but now that I’m retired, I’m trying to grow it, with the help of our other board members.” Doreen said.

Doreen serves as president of Beds from Brian, with her son Christopher as vice president, sister Diane Kamens of Lockport as treasurer and Laura Moran-Di Matteo of Buffalo as secretary.  James is always available to lend a hand with whatever task needs to be done.

Beds for Brian became a 501c3 in 2015.

Provided photo: Christopher LaFleur hugs his baby brother Brian, who was born in 1990 with a rare genetic disorder. After Brian’s death, his family founded a charity, Beds from Brian, to provide beds and bedding to children in need.

The LaFleurs said when he wasn’t being held, Brian found comfort in his warm, cozy bed. When they decided providing beds to needy children would be a fitting way to honor Brian’s memory, Doreen said they were astounded at the number of children in the area who were sleeping on the floor because they had no bed.

They soon began holding one major fundraiser a year, and this marks the 17th annual event. To date they have provided more than 6,635 items to children in need. This includes 337 beds with sheets and blankets, 1,047 pillows and 215 pairs of pajamas.

One of this year’s fundraisers is a fishing charter for four on Lake Ontario with Captain Paul Nau. Tickets are on sale until May 7 for $10 and may be purchased online through the website www.bedsforbrian.com by using Pay Pal or Venmo or sending a check to Beds from Brian, P.O. Box 76, Gasport, 14067. Payment can also be made by scanning a code on the website with a cell phone. The drawing will take place May 8.

Beds from Brian also partners with Case-Nic Cookies in Medina, where a display will fill their window during August. A bicycle will be raffled and a basket raffle will take place there.

In addition to the many personal supporters, Beds from Brian has also received support from local grants and local quilters and church groups, including the Medina Sandstone Society and Heritage Wind Community Grant.

“We are so grateful for all of the generosity of our supporters,” Doreen said.

Beds from Brian donates beds and bedding to Genesee-Orleans Ministry of Concern in Albion and Batavia, Lockport Care Net, Gerard Place Transitional Housing & Supportive Services for Single Homeless Parents in Buffalo, Holy Trinity Parish Outreach in Medina, Family Help Center In-Home Support Services in Buffalo, Old First Ward Community Center After School Program in Buffalo and Family and Community Engagement Center in Batavia. They supply children from newborns to age 18 with all new items, ranging from bed pillows to a twin bed. All recipients are vetted through one of their partner agencies.

Anyone wishing more information about this organization may visit their website at www.BedsfromBrian.com.