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Maria Kefalas
Aug 31, 2017

Kenzie and Jackson Daff: Samantha's latest update


Update #2 – (warning long post)

And then there were two….

Simon touched down in Perth this afternoon so Jackson and I are flying solo for a few weeks. Simon leaving to go home was harder for me than I thought, it was so good being able to find our way around together, to meet with the doctors and have his help getting us set up in the new apartment. He even went and spoke to the local barrister we have been to, to make sure he knew how i liked my coffee. We will miss him.

We have been very lucky to meet a lovely family who have been helping us to find our way. I feel so much comfort in knowing that there is someone close by that I can call if I ever get stuck. They have had us over for meals, driven us to get groceries, shown us the sites – they’ve gone above and beyond to make us feel welcome. We are so grateful for your help Laura Silvio and family.

With Simon’s departure, the realisation of what we are about to do really set in for me. I think I mentioned before, we spent so many months fighting to get access to this treatment and waiting for the green light to come over here, we never actually let our minds think about actually putting him through it.

It’s all feeling very real at the moment which is both wonderful and heartbreaking at the same time. Having seen Kenzie go through similar conditioning treatments (chemotherapy) in Perth, I know how sick Jackson needs to get before he has a chance at getting better. BUT, I know he can do this. I definitely have a good, positive feeling about it and so far it is all playing out in reality just as I had planned in my mind (if that makes sense). I take great comfort in that. I still feel so, so blessed to be here. A fellow MLD mumma and ally, Maria (from the Calliope Joy foundation) said to me ‘miracles take a lot of hard work’. This is so true and we are prepared to do what ever it takes.

Since our last update Jackson has been back and forth to the hospital for more tests and assessments. We haven’t got any formal results back yet but from me reading the daily discharge paperwork with a fine tooth comb, I can’t see any obvious problems or issues. I’ve asked the doctors and nurses for a schedule of appointments (you probably all know how I love to plan) so hopefully I’ll have more concrete dates for isolation in coming days. I do know that we are booked in for a one-week hospital stay on September 9 for the harvesting of Jackson’s stem cells. I think from that point on things will happen quite quickly.

Jackson is pretty bright and clued in very quickly that nurses and doctors will come to say hello to him before doing something unpleasant (like bloodwork – there is so much blood drawn each visit!). He will be smiling and playing, and as soon as he sees them walk in he shoots me a look of panic and begins to cry. This is very difficult as that look is saying ‘please, please get me out of here’, and I can’t. I have to help hold him down and comfort him as best I can. I hate the feeling of helplessness you feel at that moment, but thankfully, the nurses and doctors are gentle with us both.

I have discovered that Jackson LOVES Thomas the Tank Engine. Particularly, the theme song. It has been played over and over and over when ever we need to settle him at appointments and it seems to work. He will actually watch an episode if you sit there with him, it seems to hold his attention. I am glad I discovered this before isolation begins, I think Thomas and his Friends will come in handy!

Ashlee has finally recovered from the flu that really made her quite unwell for a number of weeks. But now Kenzie has it! She went to PMH today as a precaution for tests because we know she is vulnerable to infection being only 7months post transplant and things can turn very quickly. I’m happy to report that her bloodwork was exceptional – in fact the Doctors told mum that if you purely looked at her bloodwork, you would not know she had a transplant 7 months ago. This is wonderful news. They have put her on short course of antibiotics and ordered her to take it easy for a few days, but are not concerned. It’s so, so so hard to be away from the girls when they are not well but I know I’ve left them in great hands with their Nanna Dianne,Charli and Ben and in a few hours Daddy will be able to give them a cuddle which I know will help.

These girls need to get healthy as they are going to EURO DISNEY, in Paris before they settle in Milan. My mum and my sister are taking them on a mini-adventure, because let’s face it, they deserve it. A dinner party with all the princesses has been booked, passes have been sorted and accommodation/flights are confirmed . I am so happy that they can experience this and I am beyond thrilled that Kenzie is mobile enough at the moment to be able to really enjoy it. I'm very grateful to mum and charli for making this happen!

Jackson and I have a quiet few days ahead of us because at this stage we aren’t needed at hospital until Monday morning. Being in the bigger accommodation is great as I can cook fresh meals, do laundry and Jackson has a large space to play. I definitely enjoy doing ‘normal’ things more than I ever could have imagined.

So, all in all, we’re doing well and are eager to get moving with the treatment.

Afew people have asked for our address. We are staying at:

NH Milano 2 Residence - Daff Family (Samantha). Room 729. Via Fratelli Cervi, 20090, Segrate MI, Italy Phone: +39 02 21281

My Italian number is +39 331 2725309

Thank you for keeping us in your thoughts xxx

New Posts
  • wrwoodar
    Jul 20

    My son will be 3 yo in october and was diagnosed with spastic diplegia/CP about 2 months ago. Peds neuro ordered MRI to look for signs of CP and there turned out to be white matter injury worrisome for metachromatic leukodystrophy. He has always met his milestones aside from gross motor, primarily with balance and unsteady gait when walking. He does not jump or run but he seems to climb well. Fortunately at this point, he has not shown any regression of skills. Genetic tests are pending. If the tests are negative, has anyone ever encountered being told their child has leukodystrophy and it actually turned out to be CP? Thank you for you responses and support and God bless
  • April Garcia
    Jun 3

    I received a phone call 2 weeks ago from the Seating and Mobility Clinic asking if Jackson (our son) needed to make an appointment to have his adaptive stroller refitted. I told the representative that Jackson had Krabbe Disease and that he wasn’t with us anymore, that we had not been able to be with him since October of 2016. The representative apologized and said “I hope he is getting the care he needs” and we ended the call. Once I hung up I realized that due to my brokenness and inability to verbalize exactly where Jackson is I lead the representative to assume due to the Krabbe Disease that we were no longer able or willing to care for Jackson and that he was being cared for by someone else. I immediately called back and luckily got the same representative and explained that Jackson transferred to heaven and even though that information would not change anything within their company that I could not allow any misunderstanding that we ever gave up on Jackson or that we voluntarily let him go. The representative gasped with new understanding and offered heartfelt condolences. I hung up and let loose a silent soul shaking cry for 2 full minutes before returning back to work.
  • Maria Kefalas
    Jul 29, 2018

    Most days, the grueling routine of caring for a child with leukodystrohy takes a toll. But then, there are organizations and people who can make this journey just a little easier by seeing the beauty of kids with leukodystrophy and welcoming families into their home. The Philadelphia Eagles (and the amazing Julie Hirshey, the director of community relations for the Eagles) have been champions for kids with leukodystrophy and the Calliope Joy Foundation from the very start. We are so proud to host our biennial gala in 2019 at Lincoln Financial Field. And, we were thrilled to learn that the Eagles were hosting our friend Kendall, who has metachromatic leukodystrophy, at this year's Eagles training camp. This photo sums up the amazingness that the Eagles make possible for families in our region. We could not be more proud to work with this incredible organization. Thanks to Cindy Williamson for sharing this photo. Yah, that's Super Bowl MVP Nick Foles with our friend Kendall and her mom Cindy and pop-pop Stanley.

Together, We are stronger

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