I’M SO PROUD OF MY LITTLE GIRL!
The extraodinary seven-year-old who’s helping sick children – while sick herself.
Megan O’Leary, 7, is all smiles and friendly chatter when we meet her with her mother Judy Brock in Tinakilly Country House near her home in Wicklow town. Dressed in her favourite outfit – especially the pink top featuring a unicorn dinosaur – Megan explains why she recently had 12in of her gorgeous honey-coloured hair cut for the Princess Trust, the charity providing real hair wigs free of charge to children and young adults who have lost their own hair due to cancer treatment.
‘Well, I didn’t like getting my hair brushed because of all the knots,’ she says, wrinkling her button nose. ‘And then I was in Crumlin and I saw some girls who had cancer.’
Judy adds, in her lilting Scottish brogue: ‘She saw the girls walking the corridors. You know when you’re in this sort of situation, you’re wondering what to say. I thought it was better to let her stare and then talk about it rather than saying, “Don’t stare”. I told her, “They’ve had chemo, they’ve maybe got cancer, and chemo makes you lose your hair.” She said, “I want them to have my hair.” When she saw the little girls she thought, “I’m going to grow it.”’
Says little Megan: ‘So I really wanted to help them. I wanted to cut my hair. So my mum showed me a little picture about the Princess Trust so I wanted to do that. I felt like some children might have felt it was hard when they had to lose all their hair so I thought I should just do it.’
What makes Megan’s empathy and kindness all the more remarkable is that she herself has been very sick in Crumlin hospital and lives with pain on a daily basis. It would be completely understandable if she were to be wholly consumed by her own health challenges.
Instead, she not only donated her hair, but also raised €1,005 for Crumlin Children’s Hospital through an iDonate page, making sure to thank everyone who donated individually. ‘She would say to everyone, “Thanks for your donation!”’ cringes Judy with a smile – whether or not they had yet made one.
‘I love Crumlin,’ Megan explains, of her reasons for raising money for the hospital. ‘There’s a fish tank!’
Last September she was diagnosed with the extremely rare chronic recurrent multifocal osteomyelitis, or CRMO. Only one in a million people suffer with the debilitating condition. ‘Basically her body thinks that she has infections and so goes to fight them and she gets all this inflammation,’ explains Judy. ‘Pain,’ explains Megan. ‘You get it in your legs mostly, don’t you?’ says her mum.
‘And it’s happening right now because when you talk about it my legs get sore,’ Megan nods, in a lightly admonishing tone. Hopefully the arrival of her hot chocolate and chocolate brownie with ice-cream makes this interview more enjoyable for the first class pupil at Wicklow’s Holy Rosary National School. Judy wasn’t even sure if there were other people with CRMO in Ireland until her Facebook post about Megan’s hair donation went viral. ‘A couple of girls since have Facebooked me to say, “We thought we were the only ones”. It’s good because we don’t understand the pain they’re in. One girl says she’s had it for 15 years and they didn’t know what it was, it took 15 years to diagnose her. It took a long time for them to come up with what it was. I think she was the first in Ireland to be diagnosed with it. She says it’s amazing Megan gets up in the mornings. They’re in so much pain.’
Those words must have been sobering indeed
“I FELT LIKE SOME CHILDREN MIGHT HAVE FELT IT WAS HARD WHEN THEY HAD TO LOSE ALL THEIR HAIR SO I THOUGHT I SHOULD JUST DO IT”
for Megan’s devoted parents, Judy, who owns cattery the Cat’s Pyjamas in Wickow town, and her partner David O’Leary, a Dublin Port worker. After all, Megan was a very lively child with myriad after-school classes and activities before her symptoms began.
‘It was June last year you got a pain in your legs, wasn’t it?’ says Judy. ‘And it wouldn’t stop,’ nods Megan, solemnly. ‘The pain was in her hips first and they didn’t know what it was. I don’t know if I fully believed her because she was running around and trying to do things,’ admits Judy, who also has a younger child Ollie, aged two. ‘But then it kept happening and kept getting worse. We went to the doctor and he thought it was growing pains but it kept coming all the time and whenever the Nurofen ran out the pain would just come straight back. We got her back to the doctor again and she couldn’t see anything or feel anything. One time I felt a little lump and then no one else could feel it. Apparently that was her lymph nodes swollen because her body thought she had an infection but she didn’t.
‘Then the doctor referred us to a physio to see if they could see anything and she said she could feel the knots in the areas where she had been clenching but she couldn’t feel anything amiss in the actual area. She referred us back to the doctor and said to ask for an ultrasound. The doctor referred us for an ultrasound. Then she had about five days of no pain and I was thinking, “I wonder if that’s it over?”’
Sadly, that was not the case. ‘Then it went from her hips down to her ankle. It was nearly the start of school at this stage, so September of last year. She went back to school but her ankle was really swollen and she was very lethargic and never wanted to go anywhere or do anything for the whole summer.
‘Her ankle was really swollen, she started getting temperatures and was really sick. I phoned the doctor again because I was having to go up and down to school to give her Nurofen because the Nurofen was wearing off in school and she’d have to get more just to make it. And she was coming out of school crying.
‘The doctor sent us straight up to A&E in Crumlin because of her temperatures and everything. When we got to A&E they took her in and they didn’t know if the pains in her hips and ankle were related or whether she was just unfortunate to get them together. But the first week she was in hospital she was really sick and ➤
“I TOOK VIDEOS OF HER TRYING TO WALK AND SHE WAS JUST PULLING HER LEG ALONG SCREAMING AND CRYING”
really sleepy. They thought she might have a bone infection so they had her on an antibiotic drip. They gave her fluids and IV antibiotics because when infection is in the bone it’s really deep – they have to attack it fast and hard. She was responding to the antibiotics. She started to get better – that’s why they thought it was an infection – but they couldn’t understand the two areas she had pain. She had ultrasounds, x-rays, a heart scan...’
‘Then I went for an operation,’ says Megan, between mouthfuls of chocolate.
David looked after Ollie at home but still had to go to work every day. Meanwhile, there was also a cattery to manage. ‘I flew my mum over,’ says Judy, who is originally from Glasgow but has been living in Ireland since not long after meeting David in a Glaswegian pub on St Patrick’s Day 15 years ago. Megan celebrated her 7th birthday in Crumlin, ‘on Monday, September 18th’, she remembers. ‘But I did get a cake. That’s what I loved. For my birthday Daddy brought me some of my presents. I got a doll and that was pretty cool. Crumlin gave me a Lego doll and I had loads of fun there.’ She also ‘loved’ the school in the hospital. Meanwhile, the tests to figure out what was wrong with Megan continued. ‘She had an MRI that showed there were three hot spots on her and then they did the bone biopsy,’ Judy says, which is the operation Megan referred to.
A play therapist talked the little girl through everything that was going to happen, using props including a Kermit the Frog puppet, surgical mask and cartoon picture storybook. ‘Because if they don’t know they’ll get scared,’ Megan explains, of children about to undergo treatments and surgeries. ‘CRMO is a disease of excluding everything else,’ says Judy, of the necessity for such a battery of tests. ‘It’s fairly newly diagnosed so they don’t know a lot about it yet. They don’t have a treatment plan as such for it now. Megan is a lot better than what she was. She still gets the pains. She can’t do her Irish dancing or ballet. She doesn’t want to go horse riding any more. Or running, she’s not as fast as she used to be. She’s good at swimming. Although you said swimming made you feel funny yesterday,’ says Judy, and Megan nods.
It has been very difficult for Judy to watch her lovely daughter suffer – and for David too, of course. ‘Oh yes, his princess. Dave was stressed. He was very worried. Wasn’t Daddy worried?’ ‘That’s dads for you!’ agrees Megan. Megan had always been such a livewire, into everything. ‘Then to go to nothing, it was hard to see,’ says Judy. ‘Before, we were all the time going, “Slow down, sit down!” Then it happens and you’re like, “No, come back, go back to the way you were.”’
Though devastated their daughter must continue indefinitely to manage her daily pain with anti-inflammatories, Judy and Dave are consoled to have a diagnosis after months of fear and uncertainty. ‘I took videos of her trying to walk and she was just pulling her leg along screaming and crying. When I think back to it, it was really bad. They don’t know if she will have it forever. She could grow out of it.’ When Megan first suggested donating her hair, Judy thought, ‘Aw, my little girl. I’m so proud of her.’ They researched both the Princess Trust and the Rapunzel Trust, both of whom make wigs for cancer patients. ‘Rapunzel need the hair to be 14 inches but because the Princess Trust make wigs for children, they don’t need the hair to be as long. It can be between 7 and 12 inches for hair that goes into wigs, and 12 inches and over for an actual wig,’ explains Judy.
‘I couldn’t wait any longer so I wanted to do the Princess Trust,’ says Megan, whose hair is now cut into a very cute and more manageable bob. ‘I’m going to do it again when my hair is long enough,’ she declares. ‘I’m going to do it again and again and again and again.’