BRIGHTSIDE: Benefit for Mollyjane's Disneyland dream

AN emotional  benefit night will be held this Saturday, May 9, at  Warners Bay to help send brave five-year-old Mollyjane (MJ) Boyson   to Disneyland with her  mother Jess.

Mollyjane  was born with a rare genetic disease known as CACT (carnitine-acylcarnitine translocase) deficiency, which prevents her body breaking down fats and proteins. Consequently  ammonia builds up and is sent to her heart. Without medication every couple of hours, she could die.

It is believed MJ, who celebrated her fifth birthday in February,   is the oldest survivor of this rare condition, which has affected just 32 children worldwide in the past 65 years.

    ‘‘The night will be a celebration of this little girl and a tribute to her mother Jess, who has given MJ every experience possible during her beautiful life,’’ said family friend Bianca Judd, who has  organised the event.

 ‘‘MJ has been terminally ill since she was three days old.’’ 

Mollyjane’s   medicines cost   in the order of $1600 a fortnight, but she gets no medical assistance because  illness is classified as ‘‘terminal’’.

‘‘Jess, who is a qualified nurse, works two jobs to pay the mortgages and bills, and then there’s the medical expenses on top,’’ Bianca said.

‘‘If she doesn’t get the medication, MJ can pass away at any time. Jess is up every few hours, every night, helping MJ with her pain and administering the medications.’’

 Late last year a Facebook page was set up to raise ‘‘$10,000 in 10 Days’’ to enable MJ’s blood to be sent overseas for testing.

‘‘They raised it in three days, which gives an idea of the public support,’’ Bianca said.

‘‘The doctors found out that heart disease is part of the initial diagnosis and that’s added a new dimension to what MJ’s metabolic research team now know about the disease.’’

This means a lot to Jess.

‘‘The fact that some research has been done means  they know what to look for in future. I’ve opened a trust fund at Westmead Hospital to help other children and  inform people  about these rare diseases.

‘‘All this heartache MJ goes through, and she goes through a lot, hopefully means they can  one day beat the disease.’’

  Bianca feels deeply for her friend who has been through so much and yet continues to give. 

 ‘‘Jess lost half her roof in the storm and a big tree crashed on her garage, but she was the first person to get on Facebook to offer help.’’ 

‘‘Eighteen months ago, Jess was diagnosed with her own medical complications. It’s a lot for a young woman to endure.’’

Jess acknowledges it’s tough but rejects any notion she is unlucky.

‘‘People ask me, how do you go on, and I tell them, it’s love. 

‘‘MJ  has changed me to the person I am today.

‘‘She is never sad, she knows how blessed she is with her life.’’

In what is sure to be an emotional night, Pop diva Delta Goodrem has donated a meet and greet after the show, Village Roadshow Australia have donated a massive holiday prize and there will be other major giveaways on offer during the night. Owner of Sinclairs Events, Greg Sinclair, has sponsored the night,  charging cost price for the  function.

‘‘Jess won’t be working the two weeks she and MJ are at Disneyland and so any funds will help alleviate the shortfall,’’ Bianca said.

 To get involved, contact  Bianca Judd (event organiser) 0415 213 568