PC Community Stories
PCers have a great attitude
It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.' That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!
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Flynn is such a happy-go-lucky, cheeky, typical little three-year-old boy who knows no difference in his life.
My son Flynn was born on Sunday, May 30th, 2010 at the very healthy weight of 9 pounds 5 ounces. Flynn and I spent three days at the hospital with no real issues until we came home. My daughter asked me what was on his tongue to which I replied, "Milk." Our midwife who was visiting said, "No that looks like thrush. But more to the point, what is up with his nails?" And so began our journey into the unknown...
The first year of Flynn's life was hell. I breast-fed him for a week and a half thinking he ate much quicker than my daughter, being 15 minutes on one side. I quickly realized that he in fact wasn't taking anything. He went from the 95th percentile to the 25th percentile in those first two weeks. We were very quickly admitted to the hospital where he underwent a whole pile of tests to be diagnosed with PC. While we were in the hospital, my brother emailed PC Project for some help. With that came the opportunity to have Flynn tested genetically via them-- which we did. When Flynn was around five months old we received confirmation that indeed he had Pachyonychia Congentia - K6a mutation.
The first year of his life was spent syringing milk into Flynn, holding him down to try to get him to suck, and figuring out that a silicon teat wouldn't work. Instead we needed to use a latex teat for thickened formula with another hole cut into the teat. In that first year we also gave a whole lot of love, attention, and huge cuddles. There of course was a heap of tears and why him/us?!
Liam and I were starting to come to terms with knowing that PC is with Flynn for life. We got as much information as we could to start preparing ourselves for what was going to happen to his feet and how to care for his nails, etc. I noticed two small bruises on his chest (the size of finger marks) that didn't quite look like normal bruising. Our local doctor suggested getting blood tests done, which confirmed that he also has severe haemophilia (a blood disorder).
Since the beginning of his life we have been frequent visitors to Starship Hospital (Children's hospital in Auckland New Zealand) with life threatening respiratory breathing issues (still working out what the problem is there). We have almost lost him three times. It seems in winter we have breathing issues and in the summer the blisters on the feet appear.
We have a team of physicians and specialist who are very interested in Flynn. They take very good care of him and are all learning about PC. We couldn't ask for better care, love and support.
Flynn is such a happy-go-lucky, cheeky, typical little three-year-old boy who knows no difference in his life. He has a sister who always sticks up for him, family and friends who love him dearly. This kid takes everything in his stride. As he grows, my wish for Flynn is to educate people on how painful this nasty disorder is and to laugh off any painful words or effects of PC.
Nothing will get Flynn down.