Blaise

Seven-year-old Blaise was born with a condition so rare that it’s still under investigation.

After years of appointments and emergency admissions, Blaise was transferred to Bristol Children’s Hospital in 2023, a place that’s brought comfort and hope to her family.

Her mum, Candice, told us how the outstanding care they received inspired her to become one of the everyday heroes who regularly give to The Grand Appeal.

“At 20 weeks pregnant, I was told that my baby had a chromosome disorder. Receiving that news was one of the scariest moments of my life.

I had always felt ready to face the unknown. But being unable to prepare for the life that lay ahead of Blaise weighed heavily on my mind throughout the rest of my pregnancy. My thoughts often turned to the worst-case scenario.

We had many tests over the following weeks, but Blaise’s growth remained four weeks behind where it should have been.

Then, just weeks before she reached full-term, Blaise stopped breathing. After an emergency C-section, my beautiful baby girl started her life in the Special Care Baby Unit in Swindon on Christmas Eve 2018. She was the best Christmas present for her brother, sister and me.

Despite weighing just four pounds and experiencing heart failure in her first days of life, Blaise fought her way back to me. After six weeks in hospital, we were allowed to take her home.

Blaise’s small size and slow growth meant that she was continually in and out of hospital to monitor her heart, brain, growth and weight, as well as for genetic testing.

On top of all that, Blaise began experiencing issues with her lungs. She was eight months old when she was first blue lighted to hospital with a severe chest infection. Over the following months, she continued to get these infections and had to be resuscitated multiple times.

Following these episodes, Blaise was referred to Bristol Children’s Hospital for specialist care. Her new doctor was Tom Hilliard, a Consultant in Paediatric Respiratory Medicine, who has become a shining light in our lives.

Blaise has had regular hospital appointments since she was a baby. I have always felt that she was looked after in terms of her medical care, but Dr Hilliard was the first person who really took me seriously as a mum.

Candice, Blaise’s mum

BLOCK QUOTE: “Blaise has had regular hospital appointments since she was a baby. I have always felt that she was looked after in terms of her medical care, but Dr Hilliard was the first person who really took me seriously as a mum.” – Candice, Blaise’ mum

Dr Hilliard listened to all Blaise’s symptoms and my concerns. He made sure that there was no avenue that we didn’t investigate. Blaise had multiple CT scans, an MRI test, X-rays, physiotherapy and a bronchoscopy, her biggest procedure yet.

The bronchoscopy involved passing a tube down into Blaise’s lungs so that the doctors could take a closer look at what might be causing the buildup of mucus on her lungs.

Nothing could have prepared me to see my little girl, who is the sunshine in my life, looking so scared. But following the procedure – plus the antibiotics and daily physiotherapy she received in hospital – Blaise’s chest sounded clearer than ever before.

For the first time, she was breathing without gurgling and rasping. Although some of the damage to her lungs is irreversible, following the advice and care of Dr Hilliard, Blaise continues to make progress, and we can manage her symptoms.

We stayed in Bristol Children’s Hospital for a week following Blaise’s bronchoscopy. It felt different than anywhere Blaise had been cared for before; it was more like a home away from home than a hospital. Aside from the procedures, that entire week felt like a holiday.

The room Blaise stayed in had a starry ceiling and a TV, and we could pick from a selection of books and DVDs to entertain ourselves at bedtime.

Everyone was so kind and welcoming. The nurses were the highlight of our stay. They played Barbies with Blaise and made sure her medicine was as pain free as possible. We came back a few weeks later for an outpatient appointment and the nurses remembered Blaise, which made her day.

To say our level of care was good is an understatement. It was the best level of care she has ever received.

Candice, Blaise’s mum

During our stay, we were also offered vouchers to go to Bristol Aquarium. Sadly, we couldn’t accept as Blaise was still too unwell, but I was shocked to find out that services like these free days out were available thanks to The Grand Appeal. It showed me how far and wide the support for families extends.

We continue to see Dr Tom to manage the mucus on Blaise’s lungs and investigate the underlying cause. Despite Blaise having undergone almost every test imaginable, we still unfortunately do not have an answer.

The investigations are pointing to an extremely rare condition, but we won’t give up. I am so thankful for the work that Bristol Children’s Hospital is to do for Blaise. The staff will never know just how much they have helped my little girl. t

Blaise is the strongest little girl I have ever known. Her day-to-day life involves antibiotics, physiotherapy and lots of coughing up mucus. Despite everything she’s been through, she lives up to her fiery name; she is feisty, strong willed and loves to make people laugh.

When I think about Bristol Children’s Hospital, I have this overwhelming feeling of gratitude for all the love and care my daughter has been shown. It will always hold a special place in my heart. It is such a huge comfort every time we visit, as I feel my baby is safe there.

We don’t have much but showing my support by donating a small amount every month is the very least I could do.”