A Custom-Built Haven for Crafting Queen Nora

After being on treatment for most of her life, six-year-old Nora has long considered her room to be her safe and happy space. Some of her favorite activities include crafting, coloring, drawing, reading, styling her hair, and playing with Legos, Barbies, or American Girl dolls. She’s a self-proclaimed girly girl and loves the colors pink and teal. Her biggest request for her new room was a loft area for her American Girl dolls and a desk for all her creative projects. 

Nora received her double diagnosis of Neuroblastoma, a cancer that originates in early nerve cells, and Opsoclonus Myoclonus Ataxia (OMA), a rare autoimmune/neurological disorder caused by her cancer, at only two and a half years old. It began with tremors in her legs that quickly progressed to not being able to walk, and then loss of all her fine and gross motor skills. She finally regained these abilities following tumor resection, aggressive treatment, and weekly PT/OT, and has continued with treatment for the last four years. At this time there is no plan for it to end. She currently gets IV treatments at the infusion center in the children’s hospital every 7 weeks. Due to her neurological condition and weakened immune system she has had to grow up mostly in isolation, as any sickness can result in a relapse of neurological symptoms (such as losing the ability to walk again). Even though she doesn’t love all the pokes, medicines, and side effects that are a part of treatments, she understands it is what she needs to be healthy and takes on each day with infectious positivity. 

Fluff Interior Design took the reins on Nora’s bedroom transformation, and their team of amazingly talented designers are definitely what we’d call a Dream Team! They changed her blue-gray walls to white to brighten the room and tapped in Liz Noser to hand-paint a floral mural on one of the walls. Nora’s bed rests against the middle of this wall, and then the skilled Dave Jahn created a built-in loft over top of it, forming a lofted space next to her bed for a reading nook. On the adjacent wall, John created built-in dressers and shelves, which were painted a beautiful teal color, on both sides of a desk facing out the window. Fluff made use of pastel pinks, teals, white, and gold for her desk chair, pillows, and room décor to create a light and airy effect in the room. Omaha Neat Method organized Nora’s belongings in rattan wicker boxes on her built-in shelves and in her closet, establishing a tidy location for everything. Clear floating shelves were added to another wall to display all of Nora’s books, and gorgeous bedding donated from Beddy's completed the look.

 

Nora’s parents told her about the upcoming bedroom transformation two weeks beforehand, and since then she kept repeating "I am just so excited I can not wait" at least 15 times a day. When the moment of the big reveal finally arrived Nora was in awe of her new room, with a smile from ear to ear. She told her mom that she cannot pick one favorite part of her new room because she is in love with it all! She constantly has a smile on her face when she is in her room and frequently uses the desk and reads or plays under the loft, and loves the girly and pretty mural. She even asked if she could print pictures so she could show all of her friends at school.

Nora’s mom told us this is one of the greatest gifts Nora has received, emphasizing, 

“This program is amazing. The donations to these projects are so heartfelt to families like ours. This gift is something that we would not have done without the donations that were received. Every moment of the process has been something to look forward to. To filling out the form of what the child loves, to meeting with the designers, to the big reveal. It gave Nora something to dream about, something to look forward to, and something to be excited about. These kids go through so much and a gift like this really changes the perspective of the journey. She now knows that she can face the remainder of her treatments with a place to find comfort and joy. Every dollar goes to making a huge difference for these kids and their families.”

A million thank you’s to our wonderful sponsors! Without them, Nora’s room transformation would not be possible! Below are a few words Nora’s mom had to say about them:

This bedroom transformation is sponsored by the incredibly generous Mirati Therapeutics, a targeted oncology company based in San Diego, CA. They are relentlessly focused on developing best-in-class targeted therapies to meaningfully impact the lives of patients with cancer. Their funding made this dream bedroom come true!

“All of the designers at Fluff cared for Nora and I think that this made such a difference. You can tell that they truly love what they do, and after working with them I think that this story brought joy to them as well. I can not be more thankful to Designing dreams for gifting this room to Nora, for pairing us with Fluff, and just overall for everything. Fluff is simply amazing and so talented.”

“I had the opportunity to chat with Allison from a neat method. She is so sweet!! Her organization and skill is simply awesome, and I feel like I need her to come back and help with the rest of our home!”

  • Dave Jahn donated his time to paint and create the built-ins

“Dave the contractor, wow is he great!! I can not believe how skilled he is. He custom-built the loft and shelving/desk and did a beautiful job. I had the opportunity to meet him several times when he came to gather measurements. He is so nice and gracious to donate all of his time to build these items.”

“The Beddy's bedding is so awesome and Nora now willingly makes her own bed in the morning!”

  • Window Wares donated the woven blinds

Kelly O'Donnell

Executive Director & Board of Directors

Kelly holds an MBA in Social Impact & Leadership from Boston University and a Digital Marketing Certificate from Cornell University. She is the Founder of Lively Digital Marketing.