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
You can purchase individual tickets or a Table.
There will be a number of big ticket silent auction items to bid on during the night, as we aim to raise a significant amount of money to support the Daff's, so please bring your bidding appetite.
We guarantee you an amazing night of food, entertainment and prizes. But most importantly, you will be helping to save baby Jackson's life. Thank you for your support. We hope to see you all there!
Panelists include, young gun West Coast Eagle Elliot Yeo and Perth Wildcats Championship winning Vice Captain Greg Hire.
More high profile sports stars to be announced. The evening will include a silent auction throughout the night. Save the date AUGUST 16th, you will not want to miss it.
For more information regarding the event, or if you would like to make a donation for the silent auction, please email firstname.lastname@example.org
Update on Kenzie
It almost been 100 days since Kenzie received her new cells (26 May, 2017) and she getting stronger with every passing day. In the last month, aside from a few minor set backs, she has spent more time at home than at the hospital which has contributed significantly to her improvement. Cognitively she is as sharp as ever. She has developed a keen interest in science and she absolutely LOVES to learn. Physically, we haven’t seen the ‘rapid’ decline that we had been told to expect. While she still isn’t mobile and is reliant on a wheel chair, she still has enough strength in her legs to stand with assistance and we look forward to seeing what she can achieve with intensive physiotherapy over the next few months. She has not lost any fine motor skills and is learning to write her name and use scissors like her peers would be in Kindergarten. Most importantly, Kenzie is happy. Yes, she has some challenges still to overcome but she is content with in herself and that is all we can ask for.
Update on Jackson:
Jackson is now six-months old. He is hitting all his developmental milestones and displaying no symptoms of MLD at this stage. This is fantastic news as it means he is eligible for Gene Therapy. We hope this treatment will be given to him in September via a compassionate use program which was set up after the success of the trials in 2010. Gene Therapy aims to correct the MLD genetic defect by removing stem cells from the bone marrow of the patient, correcting them by introducing the ‘normal’ gene with the help of a lentiviral vector derived from the inactivated AIDS virus (which helps to break the blood/brain barrier), then re-injecting them into the patient. Results from the children who have received this treatment have been really exciting, many of them remain symptom free. This therapy is the ONLY treatment that can significantly change the course of Jackson’s disease and will give him a chance at living a relatively normal life. It is not yet an ‘approved’ treatment (even though it is sure to be in years to come) so the family will have to pay up to $200,000 in clinical expenses plus relocate to Italy for up to 6months. A relatively small price to pay for a second chance at life, but none the less a significant amount to come up with. We are determined to get him there and will fight until we do. Please check in on the page for fundraisers happening in the near future.
Feel free to send a letter addressed to her too - those who know her, know she would love the attention!! ;-)
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?
Praying for healing for these precious angels! Nothing is impossible for God!
Sending love and light to your gorgeous family during this extremely difficult time! I hope the treatments are a success xxx
Stay strong enjoy every minute make lots and lots of memories. MLD is a cruel genetic disorder watching our sons journey through MLD progression is heart wrenching. Stay strong and make lots of memories my thoughts and love to the family
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