Life with Lincoln Now Six - Born with Multiple Genetic Disorders (including Congenital Lymphoedema): Self-Managing with Deep Oscillation Three Years On
"Lincoln was born with a multitude of genetic disorders that are lifelong and continue to be potentially life limiting, we were first made aware of Lincolns’ Genetic disorders during pregnancy; at our 20-week routine ultrasound scan we were made aware of one condition Congenital Lymphoedema. This affects both Lincolns’ lower limbs but most significantly his feet.
We wrote to you just over three years ago about our son Lincoln who at the time was two years old, we are pleased to say he is now an energetic, full of life 6-year-old who oozes with confidence.
Lincoln was born with a multitude of genetic disorders that are lifelong and continue to be potentially life limiting, we were first made aware of Lincolns’ Genetic disorders during pregnancy; at our 20-week routine ultrasound scan we were made aware of one condition Congenital Lymphoedema. This affects both Lincolns’ lower limbs but most significantly his feet.
Lincoln continues and will remain under the care for the foreseeable future of the fantastic team at Lichfield who help aid us with the fitting of garments to aid with the reduction of swelling within his legs and feet. Lincoln as always like to show the nurses how to do their jobs and will take charge on marking his legs for measurements, he thoroughly enjoys choosing his garment colours and as parents it is great to see that Lincoln enjoys doing this.
When we wrote to you back in January 2017 we had been fortunate to of been given a Physio Pod to trial for a 6 week period this was arranged via Lichfield and Denise Hardy from Physio Pod UK LTD, the NHS did not have funding to enable us to have this machine on loan and or a long term basis. The results after six weeks were phenomenal and Lincoln took so well to the machine, we had become desperate to keep our little man on track to have as normal childhood as possible but we didn’t know how we could do this we just didn’t have the funds available.
Gemma Lincoln’s Auntie took to making sure we didn’t have to worry about the funds and initiated a Go Fund Me page with our backing. This was a big step for us, until this time we had kept things to ourselves and many extended family members or friends were unaware of the daily struggles we were encountering; as parents we knew this was an opportunity to give Lincoln something that could change his childhood for the better.
Within a day there was a page dedicated to Lincoln explaining his needs and how much the machine would make a difference to his life growing up. The page was circulated through multiple social media sites and within two months she handed over the funds and all the amazing comments people had left us, overwhelmed and overcome with emotion we took to paying for the Physio Pod; our concerns about the impact of removing it were vanished.
It was only when we had our letter published on the Physio Pod website and Lymphoedema website to promote Lymphoedema awareness day March 2017 that we realised how big our support system suddenly was, the letter was in fact published on a further 30 different websites, we were truly overwhelmed by what are letter had managed to do and we hope that it gave other people a glimpse of what can be achieved by using the Physio Pod daily.
What does life look like for Lincoln now?
Well fast forward three years and a few months and Lincoln is now six years old, there have been so many hurdles he has faced but never has a young boy shown such resilience as our son does every day.
Lincoln is a non-verbal child, one of the conditions known for his genetic disorder Polymicrogyria, this is another thing we deal with daily. The world is changing and its not always kind, we are learning this but what we see; others may not, is the pure energy, joy and happiness Lincoln can bring to a room, often referred to from our closest family members as the life of the party!
As Lincoln approached the age for starting school, we felt an enormity of trepidation all over again, with this on the forefront of our thoughts we wanted to ensure he had what he needed to succeed in mainstream school. In the summer 2017 we were given the opportunity from an amazing company called Liberator they would provide Lincoln with a laptop that would to enable him to communicate with his peers, the software is then added and updated when necessary by a company called smart-box with these two companies working in cohesion together we took to the task as any excited parent does choosing their child’s primary school.
Lincoln started mainstream primary school in September 2018, a milestone we are so truly blessed as parents we get to experience. Another hurdle and milestone conquered by a blissfully unaware Lincoln. Lincoln communicates via his laptop and has made many friends all of whom love and understand Lincoln, he goes to great lengths to show them how independent he can be. His school have ensured he has the teaching support at hand and they use both Makaton and his laptop to communicate similar to what we do at home, he has developed massively and we are seeing a very outgoing cheeky young man forming, there are as always good and bad days for Lincoln but if you ask his One to One he manages to run rings around her everyday regardless.
Summer of 2019 and yet another milestone, yet another proud parents’ moment Lincoln took part in the school sports day.
It also saw us venture abroad with Lincoln for the first time, we had held off because of the fear his legs would become too swollen or sore, yet again with Lichfield providing us with guidance on how to keep the swelling down we took to booking the flights.
The beginning of the 2020 saw Lincoln start swimming lessons he loves how much he can splash his legs, wetting anyone who who’s close enough, this does take a lot out of him and we often find he has tired achy legs at bedtime, if Lincoln was given a choice swimming or achy legs it would be swimming every time.
Lincoln has also joined a special needs football group, he loves going; with the machine helping so much we were able to do buy him his first football boots, Lincoln got to choose his boots with a personality as amazing as he is it should have been obvious to us he was going to choose the shocking orange pair on the shelf, those boots need to match the boy wearing them.
Lincoln took on a star role in February 2020, in which he was a page boy along with his cousins and big sister being a bridesmaid for his Auntie and Uncle’s wedding walking/dancing down the aisle in his converse sneakers like his cousins, he was a pro and again the life of the party.
COVID19 - home schooling, self measuring for compression and self care with the PhysioPod
COVID 19 bought big changes to many lives, ours included. A holt in attending school meant a whole new routine unfamiliar to us all, school was now at home with lessons taking place at the dining room table and via a computer screen; with no swimming, football or school playground fun to keep him active it was a daily challenge to keep to routine, the machine played its part more than ever during these months this was the one constant from what was now a very unusual routine, Lincoln has become very confident and competent at using the machine he is becoming more and more independent with it and this is such a positive. With the sunshine a new frequent occurrence lessons were moved to outdoors, when not on the school zoom lessons which helped a little with the exercise.
The prevention of attending the Lichfield Clinic has meant that we had to endure the task of taking measurement at home to keep the garments fitted, with a new routine bought on new challenges it took a little while for Lincoln to get used to Mummy or Daddy’s way of measuring not the skilled nurses who have become accustomed to a little direction from Lincoln we take our hat off to you ladies!.
Attending the clinic reassures us that things are working sometimes we don’t see the difference so easily, but when given the measurement and its written on paper we truly see the benefits the PhysioPod has given our son.
In conclusion, the last three years with this machine have enabled us to do so much and we continue to be amazed by Lincoln, we are so glad we had the opportunity to trial the Physio Pod what seems like a lifetime ago, these milestones have happened not only because we are bringing up a headstrong determined young man but because we had the support and backing of two wonderful ladies Helen Young and Denise Hardy back in 2017.
Lymphoedema is a life-long condition, using the Deep Oscillation Personal Sport (aka PhysioPod) at such a young age has enabled us to firmly place it into a routine, it is not a chore, it is just simply something we do each and every day like getting dressed, we hope that by being pro-active parents it will help Lincoln as he goes into adolescents and hopefully late adulthood.
We hope that in time the NHS will see the true benefit of the Physio Pod and release funds to enable young children suffering with this condition to seek the benefits and not only that, allow their parents to have the joy of watching their child stand side by side with their peers and be wearing the latest footie boot on the football pitch or ballet shoes on the dance floor.
We are still so unsure of what the future holds for Lincoln but for now, we know we have a cheeky, outgoing, life of the party, orange footie boot wearing young man who never stops showing us to live for the now, don’t worry about tomorrow, always embrace everything with a cheeky smile.
Thank you for giving us this opportunity to share with you what life is like for Lincoln and how deep oscillation therapy (Physio Pod) can truly make such a difference.
Mr Chris King & Miss Keylie Thomas
This letter has been written by Gemma Ball, Lincoln’s Auntie on behalf of ourselves.