Leanne’s Story

We are the Wigman’s. Our ‘pack’ consists of husband Mike and wife Leanne, two adorable boys named Logan and Dexter, and four siberian huskies living in Hampshire. As a family we love to take the dogs out on long walks, exploring the outdoors with the kids and chilling out watching movies. I am a keen photographer, recently branching out into newborn and baby photography.

DIAGNOSIS 

My second son Dexter was diagnosed with situs inversus, left atrial isomerism and dextrocardia at 26 weeks pregnant. We were told it could mean other complications and illnesses once he was born. After Dexter’s birth, his oxygen levels were low, he had a spell in intensive care, then the paediatric ward of the local hospital transferred him to another hospital. After four weeks of hospitals, we could finally bring Dexter home. Around eight weeks old, we got a diagnosis of PCD (Primary Ciliary Dyskinesia). 

PCD is a rare, inherited, long-term condition. Children with PCD have a problem with mucus build-up, which leads to swelling of the airways and infections in the airways and the ears. Children who have the condition will have to manage and treat PCD all their lives.

Now at five months old, he has had seven courses of antibiotics for infections. His daily treatment to keep his condition under control begins with a 15 to 20 minutes nebuliser of a salty solution to dry up the mucus, followed by ten minutes of physiotherapy to dislodge the dried mucus for him to cough or sneeze out. Then a nasal aspirator to suck any mucus from his nasal airways. This routine is then repeated before bedtime.

DAY TO DAY LIFE

Dexter’s condition and routine mean I spend quite a lot of the time of the day with Dexter, so it’s important to me that I also set aside and take time to make sure our other son, Logan, feels he is still just as special and also gets time with me to play, paint or just hang out together. I try to include Logan in Dexter’s routine as much as I can. Dexter doesn’t like the nebuliser mask so Logan will dance and sing to him to try to distract and calm him down during the treatment.

Dexter has spent a lot of time in hospitals, which has been hard and stressful. The pandemic has made a lot of things very difficult for everyone involved in his care. We are forever grateful to every NHS worker who has cared for Dexter incredibly well and supported us so much. One of the biggest challenges for our family has been to get our head around what this condition means for Dexter now as a baby all the way through to his adult life, and how it impacts his brother Logan’s life too. For my husband and me, it has been a challenge to adapt to life with not only a toddler but also a second baby that needs extra care and attention.

Rare Disease Day is a great way of showing these conditions that people are suffering silently with. There shouldn’t be any stigma or negativity about living with these conditions. I’m so glad that Rare Disease Day is able to raise awareness and fundraise for more research into these diseases. For me, it means that maybe one day my little one might see the day they find a cure for PCD.

SUPPORT 

We have had a huge amount of support from PCD Support UK and its members. I would like to thank every single person who has taken care of and helped Dexter both in and out of the hospital. I wish people could have witnessed first hand how hard-working and dedicated the NHS workers truly are. We would have been lost without all the support they have given us.

I’m so proud of Dexter for being such a strong little PCD warrior already at only five months old. He is such a happy little soul and I’m reminded how lucky we are to have him every time I see his big smile and hear his cute little gurgles and giggles. I’m also really proud of his brother Logan, who is showing us how much he loves Dexter and how caring he is.

Baby Dexter smiling while playing with toy. He lives with the rare condition PCD (Primary Ciliary Dyskinesia).

To learn more about people living with rare conditions, watch the UK’s official Rare Disease Day video. If you would like share your own experiences, please email [email protected].

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