I wish to have a bedroom makeover

Ryan

7

inflammatory disorder

Ryan's wish to have a room makeover

Ryan's Wish Transforms Her Room Into A Wonderland

Ryan's wish to have a room makeover

Ryan was diagnosed right before her 3rd birthday with a life-threatening medical condition called Juvenile Dermatomyositis, a rare disease that causes inflammation and swelling of the muscles and blood vessels under the skin. 

When she was first diagnosed, Ryan had trouble sitting up on her own, walking up the stairs, and was frequently fatigued, sometimes even putting herself down for a nap. Her parents knew something wasn’t right.

“Prior to this she was a completely healthy child with no problems,” her mother Erin shared. “She started having mysterious rashes on her body and then her arms and face began swelling. We took her to her pediatrician who got us in with a pediatric dermatologist right away who then diagnosed her.”

Almost immediately, Ryan found herself at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center, where she underwent blood work and an MRI. She would then face high doses of steroids, intravenous infusions of immunoglobulin and weekly shots of a low dose chemotherapy.  She was able to come off steroids in 2018 and infusions in 2019, but when she was taken off chemotherapy, her conditions began to resurface.

“To see a healthy child take such a turn in a short amount of time was terrifying, and once we learned what we were dealing with and understood the treatment she had to undergo, our world was rocked,” Erin continued. “We went through a lot of ups and downs, a lot of tears, a lot of sleepless nights.  But now we've come to accept that this is a part of who she is, but it doesn't define her. If anything, having this diagnosis has made her such a strong and caring young girl. We have no choice but to take things one day at a time and celebrate the good days she has. We don't know if she will ever outgrow this condition or if she will have to live with it for the rest of her life, but we believe her diagnosis has made her a stronger, more caring and sensitive kid who will do great things one day!

In the Spring of 2021, Ryan and her family were introduced to Make-A-Wish. Ryan’s wish experience would prove to be a shining light during a challenging and frightening time, not only for her, but for her entire family.

“We learned about some kids who received wishes in our support group,” Erin shared. “We wanted something just for her and left the whole wishing process up to her.  She decided she really wanted a room that looked like an "enchanted forest."

Ryan's wish to have a room makeover

Ryan’s vision for an enchanted forest bedroom took off and the Make-A-Wish community rallied around her wish to turn her ideas into a reality. From a wall with trees on it to making sure her favorite color purple was somehow included, to having a bunk bed just like her big brother has and a desk underneath with a bean bag chair so she could relax and work on her art, Ryan certainly had a vision for her bedroom oasis.

“The whole process just blew us away,” Erin continued. “When her wish granter sent over the slideshow of pictures of ideas for her room, her face just lit up with excitement. We had thought maybe she'd get some decals or wallpaper put on, but once her wish granter told us a muralist would be sending over some sketches, we were floored at how beautiful it was and were so excited for Ryan to get a room that any little girl would dream about.”

“The room is just absolutely beautiful and so calming and relaxing,” Erin reflected. “You could literally sit there and stare at this mural for hours, it is so peaceful and gorgeous.  Her bed she just loves and is so cozy in it and she spends a lot of time sitting on her big bean bag and playing at her desk. She is really happy with all of it. She recently had treatment and it makes her super tired, so when she got in her bed that night after being at the hospital all day she said, "I really love my new room."  I think the room not only makes her happy, but I think it comforts her as well.”

“Never in a million years did we think our family would be a recipient of something like this,” Erin continued. “It feels really good to know there are a lot of people out there like Jersey Mike's who not only donate their time and money, but they also make this cause such an important focus in their business. We are forever grateful for this experience for our daughter, and we know that this wish will bring her so much joy for years to come.”