Most first-time parents will tell you, although it’s a challenge to welcome a little one, it’s a joy and a blessing. But when Rebecca and Paul Callahan brought their daughter Matilda Rose into the world in 2010, their joy was quickly dampened. Rebecca and Paul Callahan are a happy couple from Wigan, Greater Manchester in the UK. The two loved each other very much and had decided to try for a baby. However, Rebecca’s pregnancy did not go smoothly, and due to excess fluid around the fetus, doctors decided to induce labor.
When the beautiful baby girl was finally born, the doctors noticed an unusual and large wine-colored spot that spread across half her face and her body. Despite these problems, Rebecca and Paul were thrilled to finally see their baby girl. They loved her so much already and couldn’t wait to take her home to continue their life as a family. Despite the large spot, no one had any idea that anything unusual was wrong with little Matilda until about half an hour later. At first, the doctors told the parents that it was a simple birthmark. Confident young women like dancer Cassandra Naud have proven time and again that birthmarks are beautiful, but Matilda’s mark would turn out to be a sign of something more difficult and serious.
The first problems arose when the nurses tried to feed Matilda. That’s when the child stopped breathing, and for the Callaghans, that was the first sign that something was wrong. Although the doctors had thought the mark was a simple bruise, they would soon discover the terrifying truth and realize their huge mistake. Before long, Matilda had become so ill that she was taken to another hospital for monitoring. There, they ended up performing emergency surgery to remove a pouch in her throat that was causing her feeding problems. In a few days, the parents’ happiness had returned to worry and sadness. They had no idea if they would see their daughter alive ever again. « We couldn’t travel with her because she was very sick. As we watched her being taken away, we didn’t know if we were going to see her again. We were very excited about the arrival of our baby, and now we didn’t know if we would ever see her alive again, » recalls the father. And unfortunately, they were about to have more bad news.
Two weeks after the birth, doctors learned that the huge spot was not a simple hematoma, but a symptom of Sturge-Weber Syndrome, a very rare neurological skin disease. This disease appears in babies at birth and is characterized by seizures, paralysis, developmental delay, and learning difficulties. Doctors have now also understood that the spot was caused by blood vessels under the skin. In addition, they learned that Matilda had two holes in her heart. From the moment she came into the world, Matilda was a real fighter. Although there was a good chance that she would not survive, she made it through the operation and has been fighting ever since. Her parents call her their little miracle. She also began laser treatment to remove her unusual birthmark. The treatment prevents the spot from growing, but it can take up to 16 years before it disappears. She has to go every two months, and her face looks like it’s covered in moles after each session. These are bruises caused by the laser. She has a treatment every two months, and the laser makes them look redder and more intense. Then they gradually disappear again, » Paul explains.
« People think we’re bad parents, as if we somehow caused Matilda to look the way she does, » despite regular painful laser treatments, Matilda is a happy little girl. Many people can’t help but stare at her birthmark every day. The family has to put up with stares, insults, and even teasing. Some strangers went so far as to ask Paul and Rebecca if they had left their daughter too close to a radiator. This deeply saddens the parents. « They only see what’s in front of them and jump to hurtful conclusions. I wish they could see beyond that size palm, » the birthmark is not just a cosmetic problem as it also affects the brain, eyes, and gums. The disease has made Matilda almost blind, and she’s unable to walk on her own. However, thanks to a special walker, she has been able to take a few steps on her own.
Matilda’s whole life has been a struggle, but despite this, she always has a smile on her face and has even started to say a few words. Her father says she’s a stubborn child. She either does it her way or she doesn’t. « We’re incredibly proud of her, » says Paul. « She’s amazing, and we live every day as an asset. » Her parents are doing everything they can to raise awareness of their daughter’s illness. Together, they work to give her the best life possible and celebrate every day. As soon as their daughter became a toddler, Paul started using the internet to find ways to make little Matilda’s life easier. And in 2016, they decided to make some necessary changes to their home. It needed a real renovation. They had already heard about sensory and wet rooms, and now it was time to make them a reality, as they were sure it would make Matilda’s life much more enjoyable.
A sensory room is just a special room designed to develop a person’s senses, usually through lighting, music, and objects. It can be used as therapy for children with limited communication skills. A wet room, on the other hand, is a fully waterproofed or flushed toilet with a shower area on the same level as the rest of the floor. As you can guess, neither is cheap. And in addition to the sensory room and wet room, Matilda’s parents have spent thousands of dollars to expand the upper floor of their home as well. They also installed a $19,000 Stiltz Trio home elevator to accommodate Matilda’s wheelchair. Since Paul is a builder, he did most of the work, and they paid for the renovations out of savings. They also received help from the Wigan City Council. The 18-month renovation project took a lot of energy and time. For one thing, they wanted to find an elevator that was different from the stereotypical disabled elevator. They didn’t want a clunky one that took up a lot of space. Since Matilda has multiple disabilities, they didn’t want a device that would further highlight that. And they were looking for something that could be used by everyone. And since Rebecca’s grandfather was an amputee, they wanted an elevator that would accommodate his needs when he visited.
But try as they might, they couldn’t find a handicapped elevator that they would like. During another internet search session, they came up with a perfect option: an elevator with a self-supporting structure that runs on a built-in electric motor that plugs directly into a household power outlet. This meant they could install the elevator almost anywhere in the house. The couple opted to install it in the kitchen to make it the center of attention. As part of Paul’s plans to make the elevator even more of a statement and a better match for the kitchen decor, he opted for a striking black finish and diamond plate flooring. They couldn’t be happier with the purchase. It has made Matilda’s life so much easier. « Matilda can’t talk or walk, so when she smiles, she tells us thankfully we’re doing something right, » tell her parents. Paul and Rebecca are also very aware that, at some point, they themselves will probably use the elevator. « When we get old, we don’t want to move into a bungalow, so the elevator will also benefit us in old age, » explain Paul. « It costs a lot of money to move house, more than it costs to buy an elevator. And the elevator means we can stay in the house and continue to enjoy our lives without any interruption. »
Three years later, the family also created a crowdfunding page through which they sought to raise money for a new wheelchair. According to the page, Matilda’s grandfather had recently passed away, and they had created it in his memory to help their little girl who was 9 years old. She’d become too tall for her old wheelchair and needed a new one. As stated on the page, Matilda has many problems. She doesn’t walk or talk, but nevertheless manages to cause chaos and make people smile.
