Stay­ing strong for Koen

RUN RE­MEM­BERS SON TAKEN BY RARE DISEASE

Kalamunda Reporter - - News - Lau­ren Pi­lat

BUSHMEAD cou­ple Maddy Long and Mark Cus­worth took part in Run for a Rea­son on Sun­day to com­mem­o­rate the life of late son Koen, just days af­ter what would have been his first birth­day.

Koen was born on May 25, 2017, with my­otubu­lar my­opa­thy, a rare ge­netic neu­ro­mus­cu­lar con­di­tion af­fect­ing one in 50,000 – gen­er­ally males – that nei­ther of his par­ents car­ried.

A year on, Ms Long said they wanted to do some­thing pos­i­tive to re­mem­ber their only child and cre­ated Team Koen, which was the top in­di­vid­ual fundraiser and top team fundraiser, hav­ing raised more than $13,500 for Mus­cu­lar Dys­tro­phy WA (MDWA).

“Koen’s very rare neu­ro­mus­cu­lar con­di­tion meant that he had re­duced mus­cle tone and suf­fered res­pi­ra­tory dis­tress, pass­ing away af­ter 12 days,” she said.

“The sad­ness and shock of los­ing him un­ex­pect­edly (he was di­ag­nosed af­ter his death) is some­thing no one should have to go through and un­for­tu­nately it is a typ­i­cal out­come for baby boys born with se­vere my­otubu­lar my­opa­thy.

“It was ut­terly heart­break­ing to lose our baby boy and on what would have been his first birth­day we wanted to raise some money for other kids with rare ge­netic dis­eases, specif­i­cally for MDWA, who sup­port fam­i­lies and in­di­vid­u­als af­fected by my­otubu­lar my­opa­thy.”

Ms Long said it was im­por­tant for her to raise aware­ness of the con­di­tion while also com­mem­o­rat­ing the life of Koen, whose name means strong and brave, while also sup­port­ing other fam­i­lies who had lost a child.

“We have had many con­ver­sa­tions ex­plain­ing to peo­ple what our son Koen had, rais­ing aware­ness of the con­di­tion and more broadly about los­ing a child, which is some­thing I’m now quite pas­sion­ate about,” she said.

“Once you start talk­ing openly about your ex­pe­ri­ence in los­ing a child, you re­alise how many other peo­ple have tragic sto­ries and I think shar­ing my story has given me a sense of unity and a source of strength.

“I hope that by shar­ing our story and talk­ing about Koen’s life we can help other par­ents and fam­i­lies to find the sup­port they need if they are af­fected by the loss of a child or by neu­ro­mus­cu­lar con­di­tions.”

Madeleine and Mark Long with their late son Koen, whose life they hon­oured by tak­ing part in Run for a Rea­son on Sun­day.

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