In January 2016 we welcomed our baby, Lilah, into the world. She was a healthy and bright little girl who loved to coo and cuddle, but at her 1 month checkup our paediatrician noticed she was very weak. She had an ultrasound, x-ray, and blood work done which all came back normal. We took her back to our home in Windsor, but when she started choking on her bottles we decided to bring her to the hospital.
With the first dose of a prescribed medication back at home, Lilah began choking and turning blue—once again we needed to return to the hospital. This visit was our first introduction to Ronald McDonald House Charities Southwestern Ontario (RMHC-SWO). Ronald McDonald House (RMH) Windsor had just opened and we were the 4th family to stay in the first Canadian House-Within-A-Hospital. We were able to shower, eat and be close to our daughter.
We were transferred to Children’s Hospital in London for more testing to diagnose Lilah’s illness. A bedroom was ready for us at Ronald McDonald House (RMH) London, just 165 steps from the hospital. I was taking some much needed time to shower and rest at the House, but not even 12 hours after arriving in London my husband called and I needed to get to Lilah’s bedside. With RMH being so close I was able to get to the Paediatric Critical Care Unit (PCCU) in 2 minutes to see my 5 month old baby being placed on a breathing machine as both of her lungs had collapsed. The next two weeks were like one long neverending day; our only saving grace was Ronald McDonald House.
RMH London had warm meals every night, coffee all day to keep us going, and own private bedroom. The House gave us a place to do simple things like laundry, shower, and sleep when our minds would let us.
We longed to see Lilah’s baby blue eyes as she had been fully sedated for several ys while undergoing many tests. A genetic test revealed the most heart crushing ws of our lives…our daughter had Spinal Muscular Atrophy type 1 (SMA 1) with a e expectancy of 1 to 2 years, and no cure. We had no words.
There are moments that tell the story of the power of Ronald McDonald House. One moment I won’t forget is when a RMH Family Services team member gave me a big hug. No words were exchanged, but it gave me the strength I needed to continue.
The news about our daughter’s genetic condition was devastating, but things slowly started looking up. Lilah would be part of an ‘extended access program’ to receive a new medication showing positive results in kids with SMA. On August 4th my husband proposed to me in the PCCU and we were married just two months later so Lilah could be with us on our special day. The staff at RMH made sure I felt like a bride from the moment I woke up that morning, decorating the Multi-Purpose Room at the House especially for me. There was a photo booth with props, snacks, and family pictures from our journey hanging on the walls – it was like something out of a dream.
On October 24th Lilah received her first dose of her new medication and the magic started! Each day we saw her grow stronger and stronger. Before we knew it, it was December and the House opened their Christmas Store for families. We were able to pick out gifts for our kids and children were able to choose presents for parents. This alleviated much of the stress my husband and I had with Christmas around the corner and no time or money to shop for our kids. It was like Santa’s elves had set up workshop there, creating another magical moment.The Lemont Family in the LHSC Chapel after their marriage
On December 21st, we were finally discharged to go home after 208 days in hospital and 203 nights staying close to Lilah at Ronald McDonald House Charities Southwestern Ontario.
If we didn’t have RMHC-SWO during this long journey in life, I honestly don’t know how we would have survived. The House was there for us every step of the way creating magic moments and lifelong friendships, turning our nightmare into a positive memory and giving us a “home-away-from-home” that will always be our safe haven.
Thank you, with love from Lilah’s family,
Nicole, Eric, and big brother Carter
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