Shortly after they baby was born, Kirk and Nicki were given devastating news about their precious baby’s health. According to the doctor's in charge of Archer's care, it appears that Archer was born with an extremely rare genetic condition called epidermolyis bullosa, a disease that only affects possibly 20 kids out of 1,000,000 according to statistics. It is an autoimmune disease that essentially does not allow Archer’s body to make the protein and nutrients needed to keep the layers of his skin bonded together. So basically, his first and last line of defense, his skin, is failing, blistering and burning at any point that he may have friction on his little newborn body.
As none of us ever want to imagine what they are going through, we can help ease some financial burden that will begin to add up quickly.
If you know Kirk and Nicki, you know they’d never ask for any help, but would be the first to help others. They are loving wonderful parents, facing the most trying time in their lives. If you can help monetarily in any way, please help. They are humbled and so grateful and appreciative of your prayers, love and support.
“Your body may fail you, but your Heart and your Mind will always be your legacy.”
I wanted to send everyone a quick note, to let you know our sincerest thank you for your support, strength and character through what has been arguably one of the most difficult times of my family's lives. To know that we have the support of families and people with such integrity, compassion and love really gives my wife and I the strength to continue to attack each day with a positivity and focus that allows us to care, learn and love our son with everything we have. I cannot say thank you enough to all of you, and I know that I will never be able to repay what you have done for my family during this trying time, but please know how much each of you mean to our family and our sons, Anderson and Archer.
Many have reached out to us with some questions in regards to our situation, and I wanted to do my best to help answer those question.
To begin, many of you have asked if it is possible to visit us during this time and feel as if you do not want to be a burden, or a nuisance to us. Please, please do not feel this way at all, we have an open visitation plan from 9AM-9PM, and welcome the opportunity to spend time with those who can keep our lives with the closest sense of normalcy possible. For my wife and I to sit, dwell and cry over the situation is normal and a very real and needed part of this entire process. However, being able to speak with those we respect and enjoy breathes new life into us, and helps us to show Archer how much love is in the community supporting him. You are always more than welcome to visit us if you would like to, just please let us know before hand, so we can make sure we will be available.
There is a subject that I would like to broach that is very tough to speak about for my wife and I. We cannot say enough about the truly exceptional support that we have received from our community, and many times we are asked how people can help or what we may need. While for Nicki and I, the support, prayers, thoughts, conversations and love are more than enough, there are many who have expressed that they would like to help in other ways. As adults we all understand the family responsibilities and accountability that we have as parents to try and give our kids the best opportunities for success in their lives. Much of that comes from many different areas and when grouped together helps to hopefully pave a path for them to succeed. One of these areas is finances, and so many people have expressed the interest in being able to help our family relieve stress by donating in order alleviate some of the financial fees that we are and will be incurring with Archer's short term and long term care. Through many conversations, and the swallowing of much pride, both Nicki and I must respect these wishes, as we fully understand the responsibility for our children is solely ours and we are accountable for that first and foremost. Just as you believe us, we must believe in your wishes to help in the best and most comfortable ways possible for your choice. So again, after many conversations and much convincing, Nicki and I gave our blessing to those who asked to start a go fund me page for Archer's care.
For me, I wanted to say to please, please do not feel like you must contribute because of my relationship with you, or that this is any way mandatory, or, in any way that we are seeking this out or looking for any sort of handout. Both Nicki and I are very, very proud and understanding people that fully grasp that this strictly comes down to us and our responsibility for our family. We had no intention, and the thought never crossed our mind that anything like this was a possibility. However, as I said previously, because of the trust and belief that you have shown in us countless times, we must show the same trust and respect to you, if this is a method to help that you so choose.
Simply put, we are forever indebted to each of you for every single form of support that you have shown our family. There is no way to express to you the appreciation, respect and love that we have for all of you. As I have explained to people throughout this past week...it is not that Nicki and I are so strong to handle this, or that we are made up of anything different than anyone else. It is bluntly and simply summed up that each prayer...each thought...each conversation...each text...each hug....each gift...and each one of you, has simply given us the blueprint of support and compassion to follow with our family. We have learned so much about ourselves in the last week, but mainly, we have learned that the undoubtedly exceptional people that we have within our community are the only reason that we are able to be strong because you have shown us how to be.
Thank you all so, so very much. I’m sorry that I cannot tag everyone in this post, because you all have given so much more than you know to us.
I cannot express how much all of this means to our family, and how it is because of you that we are able to know the feeling of unconditional love.
- Allison Castellucci
- Charles & Heather Warr
Organizer and beneficiary
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