Quade's journey with DMD started...
It’s 15 January 2014, a Wednesday morning and at 07:52, Quade meets the world for the first time via C-section, at just 2.57kg, and at excellent health… or so it seemed. 2 days later Quade’s father Gerrit and mother Donné, take him home with the excitement, of him meeting his older sister Ané, for the first time since he came into the world.
At around 6months of age, Quade’s parents start the process of divorce – which they now know was a good choice. Quade grows up in 2 homes and his parents try their best to work together on the well-being of the children. They start to notice that all is not quite up to standard with Quade, but brush it off that he is a late bloomer, while pediatricians tell them things like “he is a colic baby” or “he is lazy”.
In October of 2016, Quade’s father and Jade tie the knot, and the children are suddenly not only a bonus (step) mom stronger but also gain an older bonus (step) sister Kayleagh aged 7. By February of 2017, the blended family gain a little baby girl named Genevieve. As the youngest of the lot meets her milestones on time, Quade still falls behind with his, where each family member who gets to spend some time with Quade, starts noticing oddities with the way he gets up, the way he walks, his inability to run, his fear of being lifted off the ground and spun around, etc.
Here the search begins as he shows signs of advanced speech and a higher IQ than most kids his age but lacks in his physical development.
Doctor after doctor, tells the family different things, starting with his laziness, they can’t find anything wrong with him, and he needs a rectal dilation (stretching of the rectum) – which he received around the age of 2 – his Achilles’ tendons need stretching… You name it, the family visited it – sadly without success. And then Covid-19 strikes, and lockdown made things even more difficult with the bid to find answers. While still searching for answers as far as possible from home, the children start with home-schooling as this is the safest for the kids during the pandemic.
By this time, the family does not give up hope even though they start running out of answers and begin to accept that Quade is different.
On a particular evening, father Gerrit and bonus mom Jade were watching a medical series called New Amsterdam. In this episode, a little boy runs into an adult and falls over, the parents apologize profusely, while the man notices the way the boy stands up and supports himself, at this point Gerrit and Jade both see Quade in this child and knew they had a way forward with the search.
That Sunday the couple talk to Quade’s mom Donné and tell her about the suspicion they have and that an appointment with a neurologist will be made the following week. By the next week, the date is set for approximately 2 months later on 7th July 2021. In the meantime, parents are gathering information about Duchenne Muscular Dystrophy, in order to get an understanding of what to expect and what to ask doctors.
The 7th of July 2021 arrives and the couple receives the devastating news that Quade does in fact have Duchenne Muscular Dystrophy, the fatality of the condition and that there is no cure. As the couple drive back to their town, bonus mom and bio mom are in contact for a feedback session as Donné (bio mom) could not join the consultation session.
The parents sit in the lounge to discuss the findings, and it is obvious that Jade had been crying the whole of about 120kms from the doctor to their hometown. The unimaginable pain that the family now has to endure and the terrible news that has to be passed on to the rest of the family has changed many things for the Smith family – suddenly the thought of tomorrow seemed too good to be true.
Sleep is forgotten as research consumes all the free time the parents might have, moments with Quade become more sentimental and the confusion and questions begin to flood through the parents and siblings.
On 11 July 2021, Quade’s parents start the registration process for an NPO called Quade Smith Journey with Duchenne Muscular Dystrophy (QJDMD) with the goal to create a legacy for their boy, to find sufficient help for Quade but also to be a beacon of light and support to other families who are plunged into the same fate as their family.
At 8months in, the NPO has already helped some families and continues to find new avenues to assist their cause. In September 2021 QJDMD also started their very first annual project where they raise awareness and funds to assist other Duchenne families, and in November 2021, QJDMD has actively become involved in a local event with the same goal of getting the word out there. The family has had the privilege of making friends with singer/songwriter Dodo Nyoka from Benoni, South Africa, who in his bid to assist the family, had dedicated the song “Sonder Vrees” to Quade and requested Quade feature in the music video for this song. While the children’s birthdays have been a shared event over the last few years, the family was faced with making the best out of their Christmas celebrations too, as these had been divided equally since 2014.
In December of 2021, the Smith family made the decision to have one large family gathering, in order to allow a special moment not to be passed in the years that they would still have with Quade and as a whole family. Through all of the challenges the family faces, Quade’s siblings show immense strength and understanding at ages 13, 10, and 5 and though questions and concerns flood through them – they are always ready to help their brother without being asked for assistance.
Quade himself is a force to be reckoned with, through the many therapies and stretches, his physical challenges, and the arsenal of medications he drinks daily, the light within Quade shines immensely, as he faces the horrible fate that this muscle-wasting condition has left him with.
Don’t think that these things have stopped Quade one bit though. As Quade starts making peace with what is to come, he has made the most of his capabilities, he tends to look for the quiet kid when in groups and forms a strong bond quickly with the child he selects.
Quade enjoys gaming and has taken to games like Fortnite, Counter-Strike, Roblox, and Minecraft, it’s also safe to say that he has even finished Ratchet and Clank – not once but several times already.
Quade has always enjoyed building things and loves bringing out his wild ideas when building Legos or creating a village of some sort in Minecraft. During school activities, in which his parents are very much involved, Quade is very creative when the need for an obstacle course arises. His favourite colour is red and he loves dinosaurs and lions. His favourites always pop up in some way in his downtime activities and while his siblings change the rules of games like Hide and Seek to benefit Quade, he does like pulling pranks on the family. Quade is an adventurous story teller and is quite the comedian, if you know him well enough. Through all this, the family draws closer to capitalize to the fullest on the time that is left. The family were left dumbstruck as the terrifying reality of Duchenne rendered some doctors speechless and the rarity of this condition making it nearly impossible for the Smith family to find the right body of medical professionals in the country, to assist and be on board with their journey.
Duchenne Muscular Dystrophy or DMD is a rare genetic disorder, primarily found in boys, which means their ability to produce the protein known as dystrophin is 0 to none… Dystrophin is vital for muscle growth, and without it, the muscle cells waste away & die and cannot be regenerated. Typically, boys with DMD lose the ability to walk between the ages of 8-12. Boys with DMD eventually become paralysed and the functions of lungs and heart cease as the condition progresses. Life expectancy for those with DMD is presumed early 30’s, though there are some exceptional patients who have made it past this age. Girls however are not immune to this condition and as rare as what DMD is, it’s even rarer for girls to be physically affected the way the boys are. Quade’s parents knew that their children would be awesome, but little did they know just how much of a rare gem Quade would be.
