Lyndale FNC players Brendon Groenendyk and his partner Elena Vincent are the parents to 5 year old Hugo Groenendyk and 18 month old Archie Groenendyk who both suffer from 22q11.2 deletion Syndrome (Also known as DiGeorge Syndrome). This disorder can vary from minor effects to major effects, unfortunately for the Groenendyk Hugo and Archie are on opposite end of the scale with Archie battling themajor effects.
Elena was 20 weeks pregnant when she found out Archie had the disorder and it was also then when they found out Hugo has the same condition but not severely. 22q is also a genetic heart disorder and with this special case there are only 5 other cases in the world where 2 kids have the conditions and none of the parents do.
When Archie was born he was immediately put into the intensive care unit and put on a drip that kept a valve in his heart open to make sure blood flowed through, which doctors had to act fast otherwise it could have been fatal. Once he was born it became clearer what Archie's conditions were which are “Too many to count” Elena Said.
At only 7 weeks old Archie was back in the Royal Children's hospital having his first open heart surgery, Archie had a shunt placed to help grow his pulmonary artery naturally which they would use during future surgeries. After the Surgery and another 4 weeks in hospital Archie was put on a nasal feeding tube however has only recently moved to a peg which goes straight into his stomach which also “creates less attention in public”.
It was in the Royal Childrens when they were introduced to the HeartKids Organisation. HeartKids is an organization that helps families that have kids/babies that suffer from heart disorder in many different ways, from giving a space where parents can express what they've been through with parents that have shared similar experiences. Both Elena and Brendon expressed how good the organization is and the environment is where all parents can connect and just raise awareness for the troubles. Heart Kids don’t help Brendon and Elena out financially but heart kids offer the help for when parents are in hospital whilst their Heart Kids are having surgeries or in there for a long time. They also offer accommodation, food vouchers, counseling etc. Kids with Heart issues aren’t covered under NDIS as it’s a medical problem, however many kids with heart issues have development delays but parents find it difficult to get approved for funding on heart issues alone they need development issues as well like autism, or global development delay.
In Archie's most recent surgery it was to be a partial repair of the top part of his heart and other adjustments to his heart, which resulted in a full day in surgery from 9am to 10pm. Post Surgery Archie’s bpm (Beats Per Minute) was 60 beats below the average for his age, which was the result of him going into heart block during surgery which is extremely rare for the surgery that was done. After 6 weeks of observing his heart rate it was decided upon that they would give him a pacemaker which is near his stomach as there is not enough skin around his heart area as he's too young, once he is 13-15 the doctors believe they can move it to where it needs to be. Archie also has high blood pressure.
(Archie in Hospital)
Although Archie has had 4 different surgical procedures in his short 18 months of life as well as being in hospital for 5 of those 18 months, Brendon and Elena agreed that although they haven't been together for those months because of restrictions in hospitals and how many people you're allowed to have, they said they've felt like its brought them closer together and there's not much they can't get through.
To raise awareness for the organization Brendon pitched to the club earlier this year to do a round focused on HeartKids that would raise money from auctions and raffles, in which they agreed and everyone involved in the club has been so supportive and helped out however they can. For the Auction there has been multiple AFL Signed jerseys up for sales as well as other amazing items including 4x medallion club tickets. The club have also created medals for each of the teams that Lyndale play for the best on ground players, and each medal is named after one of the six kids that are involved with HeartKids. Brendon also made it clear that this was all about the kids and the organization as they are the ones that go through it and its important to raise awareness.
(Left: The Medals for best on ground. Right: The Shield awarded to the winner)
Lyndale will also be wearing special designed footy jumpers that has a main theme of HeartKids, the goal was to raise $6,000 in order to get the jumpers made which they reached with 4 main sponsors on the Jersey: Faraday pty ltd, features on the back they donated $2,000. Hume Family features also on the back, donated $1,500. Tucker Vincent, featured on the front on the left side of the chest, donated $500. With $2,000 left to raise, teammates of Brendon raised it themselves with a nod to that with the wording “Mates looking after mates” featuring on the back. The Jumper also features 4 white hearts at the bottom as a way to commemorate that 4 kids a week die of heart complications. At the conclusion of the game on the weekend the club will sell these jerseys with all proceeds going to HeartKids.
(Lyndale's Special Jumper and socks they will be wearing)
Brendon and Elena have gone through an extremely tough journey as parents to see their newborn baby go through such pain, an experience that some can say they've been through but most can’t imagine what it would feel like. With another major surgery planned for Archie next year, with Elena also looking after Archie everyday with multiple appointments a week it is hard for her to keep full time work, despite all of this they are positive people who look on the bright side of life and would do anything just for their kid to be happy and healthy. Archie is a kid who doesn't look like whos been through 4 surgeries and a lot of hospital time as he loves to smile and is a curious baby just like everyone else. Hugo, Archie’s older brother, has also had a tough time in the past 18 months not having both of his parents around at the same time and to see his brother go through all of the surgeries, he is a happy boy who clearly loves to be around his family.
Lyndale play Moorabbin at Barry Powell Reserve on Saturday at 2pm in what sure is to an amazing day out for the family as there will be free face painting, a carnival ride in the parking lot, food drinks, raffles and so much more going on as a way to raise money for this great cause. So if you are looking for something to do this weekend be sure to make it to the game and support for the cause and have a great day out with the family.