Hazel Keller is four years old and, according to her mother, Joanne, \u201cis a firecracker\u201d. She loves books, music, arts and crafts, baking, dancing, wildlife and could quote any line from the television show Bluey: In short, she\u2019s a busy, animated girl, who \u201cloves hard and thinks deeply\u201d.<\/p>\n
She also has cystic fibrosis (CF), a genetic condition that affects the lungs, digestive system, and other organs. Although it presents some limitations, thanks to advances in medicine it does not have the same implications as it did in the past.<\/p>\n
\u201cWe found out about Hazy\u2019s diagnosis in June 2021, when she was just three weeks old,\u201d says Joanne. \u201cWe had just returned home from a two-night hospital stay, as she had broken out in an unknown rash, when we received a call from a nurse [at the hospital], asking if we had ever heard of CF. She went on to tell us that Hazel was high-risk and needed to be brought in the next day for a sweat test. We were told not to Google it, but that was the first thing we did. After, we both sat in disbelief, looking at Hazy and crying, feeling like her life and ours were completely changed.<\/p>\n
\u201cThe next days were a blur and the hardest of our lives, with appointments, confirmation of the CF diagnosis, and meeting her hospital team. It was such an overwhelming time, and in the moments in between we grieved the life we thought our daughter would lead. There is so much positivity and optimism around CF, but the worry and weight of it is always there.\u201d<\/p>\n
The Limerick woman, who lives with her partner, Dylan, and two children \u2014 Hazel and two-year-old Benji \u2014 says that family was a huge support. Joanne\u2019s sister, Amy, was particularly keen to help her niece and support CF Ireland, the charity that supports the Irish CF community.<\/p>\n
Amy started a fundraiser and completed 65 parkruns in Ireland and abroad. The number was chosen to represent \u201865 Roses\u2019, because young children with CF find it easier to pronounce cystic fibrosis as \u201865 Roses\u2019.<\/p>\n
She also took part in an upcoming exhibition, Rewriting Tomorrow, by CF Ireland, which features letters and artworks by some of the 1,400 people in Ireland with CF and their families, and says it has been a hugely rewarding experience.<\/p>\n
\n My relationship with Hazy is so special\n <\/p>\n
\u201cI\u2019m sure, as her auntie, I am biased, but she is such an incredible little individual, who loves learning about the world. She is so curious, and I love seeing the world through her eyes.<\/p>\n
\u201cWhen writing the letter for the exhibition, it was emotional looking back at her journey and towards her future, She is still so young that it\u2019s hard to know what her life will look like. I know that CF will always be something she will have to manage, but with the advances in medicine, I hope she can stay healthy.<\/p>\n
\u201cShe may still be too young to fully understand the letter, but I wanted to tell her how proud I am of her, how strong she is, and that I believe she can achieve anything she wants to in life; also that I\u2019ll be there to support her in whatever she chooses to do.<\/p>\n
Amy, a pre-school teacher, says she has always been close to Joanne, but now that she has a niece and nephew, this relationship has strengthened, and she cherishes being part of the children\u2019s lives.<\/p>\n
Since that initial diagnosis, Joanne says Amy\u2019s support has been invaluable as she and Dylan have learned to navigate their new normal and make life as easy as possible for their daughter.<\/p>\n
Joanne says: \u201cShe has always been there and is always supporting Hazy; we would be lost without her and are so lucky to live near each other. She is also a huge advocate for the CF community, between the fundraising, being a CF ambassador, and always going the extra mile to raise awareness.\u201d<\/p>\n
Since her initial diagnosis, Hazel has adapted to her daily routine, which initially included medication to aid digestion, antibiotics, supplements, and daily physiotherapy. But she recently started on a clinical trial, and Joanne says the \u201cresults are really positive\u201d, so Hazel has been able to \u201cdrop some of the medications\u201d.<\/p>\n
\u201cLife is somewhat more manageable now,\u201d says Joanne.<\/p>\n
\n We are incredibly grateful for these medications, but they can come with significant side effects, and so this is something we will always have to monitor.\n <\/p>\n
The mother of two says her daughter handles everything well, but there are days when she feels overwhelmed. However, CF has become \u201cpart and parcel\u201d of their lives, and they are united in working towards Hazel\u2019s future.<\/p>\n
\u201cWhen Hazy was first diagnosed, one of the nurses told us that it wasn\u2019t that she had CF, but that we were \u2018a CF family\u2019. So this is how we try to operate. Our second child, Benji, wasn\u2019t born with CF, but he sees Hazy do her physio and take her medication, and it is very much part of life for him, too.<\/p>\n
\u201cToday, Hazel is doing really well, and we never take this for granted. Our ambition is that she can live the life she wants to. Hazel\u2019s generation are breaking new ground for what life with CF means: Travel, work, education and family. But, mostly I hope she knows how much she is loved and that we will always be here no matter what happens.\u201d<\/p>\n
Sarah Tecklenborg, CEO of CF Ireland, says the introduction of modulator therapies, alongside \u201cexcellent multidisciplinary care provided by our CF teams\u201d, has transformed the outlook for those with CF.<\/p>\n
\u201cProviding the best possible care early in life leads to improved health outcomes, and the hope is that it may enable some people with CF to achieve near-normal life expectancies. The modulator therapies are not suitable for everyone, and with support from the public, we continue to invest in research to understand the emerging challenges of ageing with CF and to find a cure.\u201d<\/p>\n
Cystic Fibrosis Ireland asks for nationwide support to meet its annual fundraising target of \u20ac300,000 on 65 Roses Day, which will take place today, Friday, April 10.
\n \u2018The Rewriting Tomorrow Exhibition\u2019 runs until April 12 at The Copper House, Dublin.
\n For more information, see cfireland.ie<\/a>
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