RE­BECCA LILLY, 33, MUM TO HAR­RI­SON, 5, AND DEX­TER, 2 (QLD)

Mother & Baby (Australia) - - M&b Awards -

Af­ter hav­ing her sec­ond child, Re­becca be­gan a new, full-time job, work­ing long hours, but couldn’t shake the sus­pi­cion that something wasn’t right with her younger son, Dex­ter. He was di­ag­nosed at 11 months with neu­rofi­bro­mato­sis (NF), a con­di­tion that causes tu­mours to grow through­out his body. Re­becca gave up her job to seek out the best pos­si­ble treat­ment for her son, co­or­di­nat­ing his care be­tween six­teen spe­cial­ists to get him into the lat­est clin­i­cal tri­als for a dis­ease that cur­rently has no cure. “The hard­est thing is to keep the mo­ti­va­tion go­ing,” she says. “Ev­ery sin­gle per­son we spoke to told us he was com­pletely in­op­er­a­ble and there’s noth­ing they could do. Ev­ery time we heard that we just dropped a lit­tle more hope.” As yet, none of the spe­cial­ists have been able to give Re­becca a clear in­di­ca­tion of how the con­di­tion will de­velop over time or what Dex­ter’s life ex­pectancy is. The fam­ily are ded­i­cated to en­sur­ing both their boys live happy lives. Re­becca works along­side the Chil­dren’s Tu­mour Foun­da­tion of Aus­tralia to in­crease pub­lic aware­ness of NF through the me­dia and to raise funds for more re­search and de­vel­op­ment into the dis­ease. “I live and breathe this 24/7,” says Re­becca. “It re­ally is hard to put on a happy face and be what my fam­ily need me to be. There is no break for me but I wouldn’t have it any other way.”

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