Landon's Hope

With so much uncertainty about the future of his condition and his needs, fundraising has become our focal point. We recently secured funding through a local program here that will cover the cost of the 2018 debra Care Conference and we have registered for it. This conference will be a huge benefit for us being so new to EB. Other families in all different stages of EB will be there to network and talk with. Doctors and other medical staff within EB will be there as well as medical and wound care suppliers. The conference is in Arizona and we need help with Fundraisers to raise the funds to help us cover travel expenses to get to the conference and back.

If you have connections, ideas or would like to do a fundraiser reach out to me on here for the Toledo area and to my sister Kimberly Rinaldi Adams for the Lima area.

Other needs we need help with financially are:

1) Landon's needs that are not covered by insurance. Some of these needs and items can be found in our Amazon wishlist at the link below.

2) Everyday living expenses as we have still not been able to go back to work full-time as we were denied the home healthcare wavier, which would help to cover the cost of a nurse to come in full-time and help us. We have appealed it and hope to hear back soon on a hearing date.

3) As I mentioned above fundraising to cover travel expenses to the Debra Care conference it starting to become our top priority. We really want to make sure we can make it out there with Landon and hope to network and learn a lot about EB, EB research and connect with other families.

4) General fundraising for travel expenses and other needs in the event we have to go to Cincinnati Children's, Ann Arbor or another specialty hospital for Landon. This would cover travel and lodging cost in the event that we do. Would hate and fear something happens to him and we worry about being able to go and stay with him and not be able to because we can not afford to with all the other increased expenses.

If fundraising takes off we would love to give back to other EB families who need help, just as so many have to us. We would also love to give to the organizations helping to #fightEB and develop a curing.

Together we #fightEB and with your help we are #landonshope

Please continue to share Landon's post, page, events and other fundraising opportunities.

With much love and thanks!

Our Early Journey

Where to begin? Well, we are newborn parents to our third child. Second official one for me. We (Well My wife did, I just supported her) had a textbook delivery all natural (props to mom she was a trooper for not getting the epidural, trust me she wanted it, just ran out of time. He came Fast & Furious!).

After he was born we noticed some damage to his skin around his nose lip and a few other spots. Then we notice his hand had the skin completely torn away. This began to raise some flags for us.


So the nurses and doctors had him looked over by the pediatric doctor at the hospital and they said this can happen if he was in the womb too long, but that was not the case for us. Almost like when your kid is in the bath or pool too long. Well, the Nicu team from Toledo Children’s (TC) was in the hospital to see another baby and they asked for them to look at our little Landon. Once they looked at him they suggested he go to TC for further observation so they prepped transportation for him. He was not even at TC an hour and they said he needs to go to the University of Michigan for further testing and treatment.

At this time I (the dad) got to the Nicu at Toledo and saw him and it took everything I had to not completely break down. I noticed additional issues with his skin and such. His fingers looked worse and his fee now had some blistering and issues.

The doctors at the TC Nicu came in to see me and this wasn’t a couple of doctors this was a team of doctors and staff. They explained to me what they believed he had which is called Epidermolysis Bullosa (EB). It is a super rare skin condition that only affects approximately 200 children a year. Unfortunately, there is no cure or treatment for this condition. The only things we can do is limit opportunities to cause issues, pain management and wound care.


The Condition
"The worse disease you've never heard of."

This condition causes the skin to tear or blister from friction or pressure by touch. Children with this condition are called “Butterfly Children” because they are as fragile as a butterfly’s wings. This condition does not only affect the top layer of skin but can affect his organs, oesophagus and airways basically anything with tissue (aka the whole body). 

EB has been known to be fatal, but many kids go on to live long and fairly normal lives (Just a little more cautious.). EB has various types and sub-type(s) (yes types a child could have various types). Also, each type and sub-type(s) can vary in how severe they can be. It is tough to determine how serve his case is at this point and a test cannot confirm. We can only find out as he continues to grow and develop.

This is a completely life-changing diagnosis for us and we are in the process of putting things in place to allow him to live a safe, healthy and as normal a life as possible.

For more information on EB you can read more from the following websites.
http://www.debra.org/ - Offical Association for the condition for families. 
http://www.ebnurse.org/  


Where your donations are going toward

Since we have had time to process and learn more about his condition from reading and countless other people who have children we have clarified the needs. 

- Transition cost to help us move and bring Landon home. To either our current home or our new home. Complete THANK YOU!

- Relive financial pressure while we adjust, learn and determine how our work schedules will work out. Currently, my wife is not working which is and will be hitting us big financially. This is our need now.

- We have slowly started making contact with a variety of organizations from our reading and research and from those people have recommended. We are still unsure what all we can have covered or taken care for us. We want to be ready and not have to worry if an issue comes up with Landon about if we have the money financially to get him to where he needs to go, pay for the care he needs and if we will be able to stay close to him.


- Also a whole host of needs for little Landon that we or the doctors do not know along the way.

We Love You All!
Anything you guys can help us with is a blessing. We love you all and thank you for helping us through this very, very difficult journey. Any and all money raised is going to go toward providing everything we need to allow for Landon to come home safe and have as normal a life he can.











Non-Financial Help
We do have non-financial needs in this process and transition Please feel free to reach out and contact for other ways to help.
  • Anonymous 
    • $100 
    • 34 mos
  • John Melnyk 
    • $100 
    • 35 mos
  • Kathy Coy 
    • $25 
    • 35 mos
  • Anonymous 
    • $100 
    • 37 mos
  • Olga Katayama  
    • $25 
    • 37 mos
See all

Organizer

Aj Rinaldi 
Organizer
Perrysburg, OH
  • #1 fundraising platform

    More people start fundraisers on GoFundMe than on any other platform. Learn more

  • GoFundMe Guarantee

    In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more