Hunter’s Hope Symposium: Thursday 

Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent care and treatment for their child.

You can read more about the LCN here.

Leukodystrophy children have unique medical needs and issues and most hospitals have had little to no experience with these diseases.

The centers are going to be as geographically spread out as possible so that traveling can be reduced for as many families as possible. Currently, most affected families go to Pittsburgh or Raleigh. Once the LCN is established, there will be many more options.

Many times, doctors see kids like these and don’t bother to treat them because they are terminally ill. One of the questions asked of the potential of LCN center is this: 

‘Are you treating this child as though they are living? Or are you saying “go home, there’s no treatment?”‘

Children’s Hospital of Philadelphia became the first Leukodystrophy Center of Excellence and it was interesting to hear their presentation given that they are so close to where we live.

I loved this quote:

Dr. JoAnne Kurtzberg from Duke University spoke and gave great insight into what they have done in the world of leukodystrophies.

As always, Victor was very attentive 😄

Later, we heard reports on the current research findings – which are so promising! – and heard more about the results of the ten years of screening for Krabbe in New York State. 

They are also very close to improving the NBS test for Krabbe by looking for two specific biomarkers instead of just one. 

Exciting things are happening in the quest to find a cure for Krabbe and other leukodystrophies, and the future is bright. 

Overall, we feel encouraged by what we heard today and are so glad to be here. 

Hunter’s Hope Symposium: Day Four

Today was a “free day” for families to do as they pleased. Most spent time at the pool and relaxed around the resort.

Brennan played golf with three of the other fathers this morning in fog! The course is also on the side of a mountain which made it a challenge. 

We took Tori to the pool again and she loved it so much that she fell asleep! She was so relaxed!

   
    
    
    
    
 Later, Brennan treated me to a massage at the spa here at the hotel while he watched Tori. I married so well 😉 I thoroughly enjoyed my much-needed massage and tried to just relax and let my mind be quiet for once. It felt so good.

  
After dinner the kids did a talent show for all of us and it was amazing. There were several beautiful, emotional moments and much laughter as well.

   
    
 Many of us stayed late visiting, holding babies, and enjoying our last night together. The hardest part about leaving is that we don’t know if all of these babies will be back next summer. The tentative dates for next year’s symposium fall on Tori’s 2nd birthday, so we pray that she is well and able to travel so that we can celebrate with our leukodystrophy family. 

   
    
    
Brennan talking to Jill and Erin Kelly about Tori while holding Collin…

    

 I loved watching the siblings of affected children this week as they loved on all the affected babies.

   
  
 Tori and Gemma had a sleepover on the table 😉❤️😴

  
Tomorrow morning we will drive back to Pennsylvania, but we are already looking forward to our next Hunter’s Hope Symposium. ❤️

Hunter’s Hope Symposium: Day Three

Today’s format was similar to yesterday: breakfast, seminars updating us on current research and legislation, and plenty of social time. 

One of the amazing things that was shared was this: some of the leukodystrophy researchers who work for Hunter’s Hope were here for our welcome dinner on Wednesday; as they saw all of us with our babies and heard some of our stories, it apparently impacted them greatly. As with any career, you can become jaded and it can feel like just a job. Being with all of us increased their urgency to continue searching for a cure, better treatment, etc. because they realize that time doesn’t just cost money, it costs lives. I am so thankful for the brilliant minds who are working so diligently to stop these diseases from taking more lives.

Tori was having a rough time this morning and we think it was a tummy  ache (note the outfit changes in the photos 😉). Thankfully, after a good nap, she was much happier. 

  
    
    
    
After lunch the men and women split up for a couple of hours of sharing and processing. It was a powerful and emotional time as we each shared our stories and struggles of everyday life with a terminally ill child.

The extra special thing about today was that we were all able to participate in the Every Step Walk (you all helped us raise over $1,100 for Hunter’s Hope!) this evening.

    
    
Before the walk, balloons were released in honor of all of our babies and the ones who have gone before. They played the Carrie Understand one “I’ll See You Again” and it was such a powerful time as we watched the balloons float away until we could no longer see them.

  

  
We then all did a short walk and all got to be celebrated as we crossed the finish line. 

    
  

After dinner we had some fun activities and more cuddle time with our babies.   
  

  
    
    
 

Tomorrow is a free day for the families until dinner, so we will be taking it easy most of the day. Brennan is going to play golf with some of the other men in the morning, and I am having a massage in the afternoon 😄 

We have been so blessed and encouraged by being here, and though we never wanted to be part of a community like this (who does?), we are so thankful for each and every person here and for the encouragement they provide to everyone else. 

None of us can do this on our own, so having support like this is invaluable, and it is vital. 

Beauty in the Midst of Brokenness…

As we have enjoyed the past few days here in New York with our leukodystrophy family, what has struck me more than anything is the love that radiates from each and every person. 

Each and every one of us are in similar situations: our children are dying or have passed from horrific diseases. We are broken people, often unsure of what even the next hour may bring. 

Under these circumstances, you would expect to see constant tears, depression, sorrow, despondency. 

However, what we have seen is the exact opposite.

These parents have chosen to make each day matter. They have chosen to make sure their child truly lives the fullest life possible. They choose joy. 

I love watching the moms and dads with their children, showing such love, patience, devotion, and selflessness toward their precious gifts.

But what has impacted me even more has been watching these moms and dads with the other affected children – not their own – because it is evident that they love these children nearly as deeply as they love their own.

I have been trying to capture moments between parents and their babies or the babies of others specifically for this post, and here are a few that I managed to take: 

   
    
    
    
    

I have loved observing all of this , but I have especially loved watching the fathers – both with their babies and the babies that belong to others. They love holding them, talking to them, getting pictures taken with them, and loving them. They are so gentle and tender, they are completely involved in their care, and the love that radiates from their faces is indescribable.

There is beauty in the broken if you choose to look for it.

No parent chooses to have a child with special needs, but that shouldn’t change how they love their child. 

The parents we have been with this week make a daily choice to love their children selflessly, joyfully, and abundantly. They choose to give their child the best possible life they can have. And they are an example we all should follow. 

Hunter’s Hope Symposium: Day Two

What a busy and fantastic day!


Tori got to spend time with some of her buddies…this is Parker from Maryland. He is eight months old.

  

We heard from several of the leading researchers and experts in Krabbe and other leukodystrophies.

It was so informative and we feel so encouraged to know that such innovative, rigorous, and continuous research is being done to find a cure for the disease.

No matter what cure may be found, early detection is still imperative. We must continue to push each state to add Krabbe to the Newborn Screening Test!



Tori thoroughly enjoyed the lectures 😉  

Brennan had a chance to visit with Jim Kelly for a few minutes to talk about Tori.
  

Marshall’s daddy, David, wanted to hold Tori. Marshall is in the background.


  
  
  

And then it was group picture time! You think your family portraits are difficult? Try adding in adaptive strollers!

The children here do not all have Krabbe – many different leukodystrophies are present, which explains the age of some of these children.


Jim Kelly gave each child an autographed hat ❤️
  
  
  

We had dinner with Tenley and her family ❤️

Tori wasn’t so sure about having another picture taken – even with Jim! 😉

Then, the highlight of the evening: a nine year old boy from Buffalo brought blankets that he makes for sick kids to all of our children. Kwentin collects recyclables and uses the money to go to the fabric store. He said his goal for this year is to make a blanket every day.  What an incredible young man! You can see his Facebook page here.

  
  
  
  

Tori’s blanket from Kwentin ❤️


  

It was an amazing day. 😄

Hunter’s Hope Symposium: Day One

We made it! 

Our day started early as we had to go pick up our rental vehicle. We decided early on that renting a bigger vehicle was essential if we were going to attempt this drive (4.5 hours) with Tori – given her “love” for the car – and given the amount of stuff we would have to take. We hoped that a newer, smoother car ride might help her be more comfortable. 

So, we found a good deal through AAA for a mid-size SUV and thought that would be plenty of room…

…it wasn’t.

I walked out to the assigned vehicle and opened the back to evaluate the space and I knew immediately that it was too small. My trunk is bigger than that was! Her adaptive stroller would not have fit in that space.

One thing we have already learned is that having a child with special needs requires a lot of stuff. A lot. Add in adaptive equipment and you are basically moving in wherever you go. I have a feeling we are going to have to get a bigger vehicle once her permanent stroller arrives…it definitely won’t fit in our current cars!

This photo shows MOST of our partially unpacked stuff. Only the gray bag on the left is our stuff – the rest is for Tori!  

The manager of the rental car company was so kind and upgraded us for a major discount when I explained the reasoning. That unexpected kindness was so appreciated!

We left on time and headed north. Tori slept pretty well though she definitely had her moments of protesting. We had very few incidents and are so thankful. That was the longest she has ever been in a car.

We stopped once for lunch and to change her diaper. The total travel time was about 5 hours, which isn’t bad at all!

We got settled in and then headed down to the pool where we met some of the other families. Tori had never been in a pool before so we were excited to try!

   
    
The pool was a little too chilly for her, so we tried the jacuzzi next. It was warm, not hot. She loved that!

    
    
 Floating!

  
    
 

After we all got cleaned up we headed down to the welcome dinner. As we looked around at all of the families in attendance, a mix of emotions ran through our hearts. On one hand, it was amazing to be in a room where no one would be surprised by the sounds of a suction machine or feeding pumps, where we are normal for once; but, it was also so heartbreaking to look around at all of these families who have terminally ill children (and those whose children have already passed) and recognizing the heartbreak that each and every person in that room has experienced or will experience. 

Overall, joy emanated from each person in attendance. This is a huge family reunion and with that comes excitement, joy, and love. Watching the moms and dads with their special babies/children was so wonderful. Such devotion and joy in the midst of the worst of circumstances. 

    
Tori and her friend Gemma…

 Jim Kelly welcomed us all to the symposium and told his story about his son, Hunter. 

  
He talked about how his wife, Jill, is the one who told him that THIS was the perfect use for his name/fame: leukodystrophy awareness and action. Indeed, their foundation has helped so many families! We will hear more tomorrow about the latest research and other progress reports.

Team Tori couldn’t stay long after the dinner because Miss Tori had had enough of being good 😉 Haha. She was tired and we knew it would be best to just come back to our room. We always try to do what is best for her, even if it means that we miss out on something.

We know this will become an annual trip for us, and we are so excited to spend more time with these precious babies and families in the coming days.

Hunter’s Hope Walk 

  

In less than two weeks our family will be traveling to upstate New York for the Hunter’s Hope Family Symposium, and we are so excited. It will be so incredible to be with so many other Krabbe and Leukodystrophy families because no one understands our journey like they do.

While we are there, we will be participating in a short walk (less than a mile, since our babies are fragile) to raise money for Hunter’s Hope.

This organization does so much! One of their biggest roles is to work on adding Krabbe to the Newborn Screenings in each state (43 to go). 

Had Pennsylvania had legislation and Newborn Screening in place, it is likely that Tori would have had a stem-cell transplant shortly after birth and she would be healthy. This testing is crucial!

We have set our family fundraising goal at $1,000 to help this amazing foundation in their research, advocacy, and family support for Krabbe and Leukodystrophy. We would love to exceed that goal!

Would you be willing to donate to Hunter’s Hope for our team? If so, you can donate here: 

http://www.huntershope.org/site/TR/EveryStepWalk/General?team_id=5580&pg=team&fr_id=1881

Let’s support this amazing organization that is doing so much for our Krabbe and Leukodystrophy babies. ❤️