Can you imagine growing old with only 1 out of your 3 children? this unfortunatley is the harsh reality that the Daff family are now facing with the cruel diagnosis of Metachromatic Leukodystrophy being dealt to 2 of their beautiful children.
Sam and Simons world has recentley been turned upside down with Mackenzie aged 4 and Jackson only a few weeks old now facing this horrible genetic disorder, which sadly is terminal with no current cure.
No parent should ever have to watch their child go through something like this, let alone have 2 kids with the same condition. This disorder is extremely rare and the doctors who have diagnosed Mackenzie & Jackson with MLD arent aware of any other cases in WA.
What is Metachromatic Leukodystrophy?
Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies, which are characterized by the toxic buildup 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.
Is there any treatment?
There is no cure for MLD. Bone marrow transplantation may delay progression of the disease in some infantile-onset cases. Other treatment is symptomatic and supportive. Considerable progress has been made with regard to gene therapy in an animal model of MLD and in clinical trials.
Recieving the above diagnosis is a parents worst nightmare and something unimagineable that the Daffs now have to process and navigate through, not only are they going to need your strength, love & support but financially this is going to impact them, so we need your help in raising some funds!
Being the kindhearted people that Sam & Simon are they don't like to ask for help or handouts, so as close friends of the Daff family we have setup this page on their behalf to raise funds to help ease financial strain, assist with therapy and medical aids for the kids and to also allow them to create some beautiful memories as a family. ALL funds will go directly to the Daffs!
Why should you donate?
DO IT for Sam & Simon, to allow them to spend every minute with their kids while they can, creating a lifetime of happy memories.
DO IT for Ashlee who is an innocent bystander in this, who all though has been given the all clear and does not have the condition but will have to watch her big sister and little brother be taken by this horrible disorder.
DO IT for Mackenzie & Jackson, even though their lives are going to be shorter then most, lets give them the most amazing life we can, lets allow them to live each day to its fullest with their loving parents by their side
Time is precious so lets make every day count and do it for Daffs. Please dig deep and help this amazing family
- Deborah Hall
- C & E Duperouzel
- M and E Della
- Clare Clarke
- Rebecca Kelly