Imagine the heartbreak of discovering you are going to lose two of your precious children. This family have…

Perth couple, Simon and Sam Daff, discovered both their new baby boy Jackson and eldest daughter, aged just four, have a rare degenerative disorder that will kill them.

It started with a limp their daughter Mackenzie developed in June, but the devastated family was shocked when she was diagnosed with metachromatic leukodystrophy, reports Daily Mail.

‘To have that news while we were expecting another baby and to be told that all three children could possibly have it was absolutely the worst moment of our lives,’ Mrs Daff told The West Australian.

MLD sufferers die six to 14 years after they start showing symptoms, depending on which variant of the disease they have.

The chance of a child having the neurological disease is one in 40,000 as both parents need to carry a defective gene.

There is only a one in 10,000 chance this could happen, and even then only one in four children born to parents with the gene develop MLD.

The couple said knowing they only have a short time to be with their children made them feel helpless, but they were trying to enjoy life as much as they could.

‘That’s the hardest thing I’ve found with Jackson, you want to bond with him but you also know what the end result is,’ Mr Daff said.

‘I’ll have a day where I’m just walking around the house crying because I’m holding him and I feel close to him… it’s a weird feeling.’

Mrs Daff has similar feelings: ‘If you had told me that I’d be dealing with this now, I would have thought I’d be in bed, unable to get out, unable to talk,’ she said.

Ashlee, aged two, does not understand what is happening to her big sister, but knows she needs help as her balance and mobility start to become affected.

Mrs Daff said the little girl was already helping Mackenzie tie her shoes and picking up anything she drops as she can’t lean over to grab it without sitting down.

The family’s friends started a GoFundMe page to help with medical bills and help them give the children as many goods memories as time will allow.


What is Metachromatic Leukodystrophy?

Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies, which are characterized by the toxic build up of lipids (fatty materials such as oils and waxes) and other storage materials in cells in the white matter of the central nervous system and peripheral nerves.

Symptoms include muscle wasting and weakness, developmental delays, progressive loss of vision leading to blindness, impaired swallowing , mental deterioration, an inability to control movements, seizures, and dementia.

Symptoms continue to get worse, and death generally occurs within 6 to 14 years after onset of symptoms.

Share your comments below.

Image via gofundme

  • I pray they can fully enjoy the time that is given to them with their children and know the value of that. At the same time I pray they receive the courage and strength to deal with their feelings in regards to their terminal sick children. May God bless and draw near to them.


  • That would be absolutely devastating. It would be too hard to lose one child let alone 2


  • Beautiful children so young to be going through a hard time so early in life, this is very sad! My heart goes out to them.


  • So heartbreaking. I don’t know how Id cope.


  • So sad for the family, what a tough road to travel…


  • Aw bless them, how awful ! My thoughts & prayers are with this family.


  • absolutely heartbreaking for them, my thoughts go out to them right now xx


  • This sort of tragedy really upsets me. Some situations can sometimes be genetic which means that perhaps their healthy child could be a carrier.


  • heartbreaking ????????????
    Really very sad about them


  • It’s such a terrible illness. I wish them lots of strength in the tough times to come. :-(


  • So very sad to read the family are going to lose two of their children,my thoughts and prayers are with them.


  • Such a heartbreaking thing to read. To lose a child is just unthinkable to me, but to have to look at two of their children knowing what is to come. I hope their Go Fund Me page will go well and allow the parents to fill their children’s lives with wonder and that the memories of those days will stay with them and carry them through the remainder of their days. God Bless them and their other little daughter who will also have so much to deal with herself.


Post a comment
Like Facebook page

LIKE MoM on Facebook

Please enter your comment below
Would you like to include a photo?
No picture uploaded yet.
Please wait to see your image preview here before hitting the submit button.
Your MoM account

Lost your password?

Enter your email and a password below to post your comment and join MoM:

You May Like


Looks like this may be blocked by you browser or content filtering.

↥ Back to top

Thanks For Your Star Rating!

Would you like to add a written rating or just a star rating?

Write A Rating Just A Star Rating