Make each day count for the Daffs
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
Feel free to send a letter addressed to her too - those who know her, know she would love the attention!! ;-)
Results are in and her MRI was completely normal. This cruel disease HAS NOT yet reached her brain and she will now be admitted to PMH hospital at the end of January/early Feb to undergo an unrelated umbilical cord transplant. This treatment has potential to alter the course of her disease and provide a better quality of life going forward. It is important to note it can not reverse or cure any damage already done, but given her symptoms are currently only lower limb weakness we are hopeful it can make a big difference!
The transplant process is brutal and commences with 9 days of intense conditioning (chemotherapy) followed by isolation for a number of weeks after her new cells have been transplanted. It will be tough, but Kenzie is tougher. She works so hard to overcome her current physical challenges and this is just one more bump in the road. We will get her through this.
As for little Jackson, we are hoping that he will be eligible for Gene Therapy ( http://www.telethon.it/node/51561) in Milan, Italy. This therapy is still experimental but the results for pre-symptomatic kids is pretty exciting. Given Jackson is only 10 weeks old we feel this would be the best course of action. We have been in touch with Milan and hope that we will be accepted on a new compassionate use program being set up as a result of the promising results from the 2010 trial. If accepted, this treatment will cost us $100,000US plus living expenses in Milan, Italy. It's a lot of money, but you can't put a price on life saving treatment!
The support we have received from the community so far has been nothing short of inspiring. We have had amazingly generous offers of free childcare for Ashy while Kenz has treatment (the Family Tree Learning Centre), swimming lessons for our children (Seadragonz), free passes to a number of play centres (inflatable world, chipmunks), offers of photo shoots (peas in a pod photography and Melissa Sheed Photography) not to mention the amazing financial donations we have received. We are blown away.
The next 12 months will be really difficult for our family with our kids potentially receiving treatments/ recovering on opposite sides of the world! But, we know we can do this!!!
We hope to do some fund raising events over next few months. Money raised will help Jackson get to Italy and provide financial support while Kenzie is in hospital receiving her transplant and Simon is unable to work as frequently. We will keep you posted.
The kids are all doing really well. Kenzie is still our gorgeous, happy little diva, Ashlee is still our crazy kid that beautifully marches to her own beat and lights up a room and our super cute Jackson is constantly smiling and gettinh bigger by the day. They are all happy.
Thank you for all your continued support. We will be forever grateful.
Love the Daffs xx
My 2 kids have a similar disorder - call me if you need a chat or a hug
Is the family interested in having some cards and/or new books sent to them? I am a reading teacher in NY and I would love to send the kids a treat! Is there an address they have avaible for donations?
What a beautiful little Princess it sure looked like a wonderful birthday And what a fantastic cake !!! May all your days be just as special xxx
Can someone pls touch base with me as a national magazine is keen to feature this family, thanks Ash (i have sent you a message too)
Happy birthday Kenzie - you make a very beautiful princess!!!
Happy Birthday Kenzie, you make a beautiful princess darling xxxx
Great to see your beautiful girl smiling. I'm glad she had a wonderful birthday. Thanks for the update :)
Happy birthday little princess ❤️❤️
Happy Birthday little Princess
Thoughts are with you all....much love Tracey and Tony xxx