Nikki shares her story of being a proud mom of an Achalasia Warrior and highlights how important support is for carers and loved ones too.
Nikki is a proud mom of an Achalasia Warrior. To support other parents of children with achalasia, she created the PAK – Parents with Achalasia Kids Facebook group, which parents from all over the world have joined.
Ahead of Rare Disease Day, Nikki shares with us her son’s achalasia story, and her experience of loneliness and isolation throughout her son’s diagnosis and treatment. Of creating a support community for other parents on Facebook, Nikki says:
“I had to find a way to take back some of what Achalasia stole from us, so I started The PAK – Parents of Achalasia Kids on Facebook. Every time a family joins the group they get supported and reassured, and they are promised that they are not alone in this adventure. It’s a twist but it feels like achalasia loses its power when families feel reassured instead of terrified.
It feels good to be part of the positive side of this diagnosis – and we will forever be grateful for the online adult achalasia communities who gave us grace and space when there was no other option for paediatric cases and their parents.”
Please comment on and re-share Nikki’s story to increase awareness of this rare condition and to unite for a rare swallowing condition. You can find out more information about getting an achalasia diagnosis, and about different forms of treatments on Achalasia Action’s website. If you need support on living with achalasia, contact us on info@achalasia-action.org or on 0300 772 7795. You can also join our Achalasia Action Facebook Group and follow us on Instagram and X (formerly Twitter).
Nikki’s Achalasia Story
In March of 2019 my 13 year old son was literally starving to death before our eyes. An esophagram (also known as barium swallow) showed the classic bird’s beak shape and it was the first time we had ever heard the word: Achalasia.
A few weeks later his Manometry test confirmed the diagnosis: Achalasia Type 2. We had been frantically researching and trying to find other parents who knew what we were going through and could give us some hope and some idea of what to expect in the years ahead. It was the loneliest and most isolated we had ever felt. One in a million kids … one in a million parents.
On 25 April 2019 we flew across the USA to Children’s National Hospital in Washington DC. My son was the 10th paediatric POEM done there – and once he completed 6 weeks of dietary progression he thrived. He went from 5’9 and 111 lbs to 6’4 and 190 lbs. He plays hockey and golf, and he’s ranked with the top athletes in the state for both. His laughter and ceaseless appetite are my favourite things to celebrate.
I had to find a way to take back some of what Achalasia stole from us, so I started The PAK – Parents of Achalasia Kids on Facebook. Every time a family joins the group they get supported and reassured, and they are promised that they are not alone in this adventure. It’s a twist but it feels like achalasia loses its power when families feel reassured instead of terrified.
This is my sweet boy on his senior night for hockey – watching him grow and chase life has been the greatest gift. His story gives other families hope, and his medical team in DC is leading the field globally with their paediatric POEM expertise and experience. It feels good to be part of the positive side of this diagnosis – and we will forever be grateful for the online adult achalasia communities who gave us grace and space when there was no other option for paediatric cases and their parents.
