Meet Jack! Isn’t he such a sweetheart?
I first saw Jack a couple of months ago when Tobias and myself were deciding on an orphan to pray for since one of the two we regularly pray for had found a family. His kind eyes was what caught my attention and his very special medical condition led me to immediately Wiki it. It was heartbreaking to know that he isn’t getting the care he needs and may already be in danger of a much shortened life. I said a little prayer at that time, hoping his family would find him asap.
And they have! Praise the Lord!
Jon and Angela are committed to bringing Jack home as soon as paperwork and funding allows them to. They know they can provide for his needs and it is very important that they get him home without delay.
I’m privileged to be able to help them by sharing their story here.
Here’s an online interview I did with them to help you understand Jack’s condition and their situation better:
* Tell us a bit about yourself & Jon (how you met, your journey together so far)
J&A – Please allow us to first thank you and all of your readers for caring about sweet Jack and rallying around all of us as we work to bring him home as fast as possible. I’m happy to share more about our family and about Jack’s needs. Jon and I met virtually in an online community we belonged to several years ago and we hit it off right away. About a year and a half after we met, we were married at our local military base’s chapel. Jon is an active duty US military member. I am a middle school teacher. We have two wonderful boys (I’m blessed to have two sons who so readily embraced me as a parent when I came into their lives years ago) and a beautiful baby girl who we adopted in the summer of 2011. Our family loves animals, public service (like volunteering in the community and other avenues of this type of service), cooking/baking, music, classic movies, arts and crafts, hands-on learning and more. We’re an active crew and love exploring wherever we happen to be at the moment.
* What led you to adoption & specifically why international special needs adoption?
J&A – Adoption has always been near and dear to our hearts. Jon and I talked about adoption within our first couple of dates as we both have long felt drawn to children in need and have known we wanted to pursue the path of adoption. We always remained open to both domestic and international adoption. Soon after we got married, we starting caring for foster children in our county and made it known that we would be honored to work with children with varying needs, sibling group size, race, religion, age, etc… With that openness, we had a lot of placements of children with medical needs, traumatic backgrounds of horrifying abuse, mental health needs, educational difficulties, large sibling groups and the like. While we remained open to adopting children who we might have been placed with, that never came to be and that was fine with us. After all, if children can safely remain in their families of origin, that is what is best. Our hearts are truly with all children in need, but we feel a special love for children with medical, developmental and other needs as well as children about to “age out” of their country’s or state’s child welfare systems. In the summer of 2011, we were presented with an adoption situation (domestic) and we were blessed with our daughter. We have known for years that international adoption was in our future too, as we feel that geography should never be a barrier in getting a child what all children deserve but many, sadly, never have – love, family, medical care, other resources and hope. With many international programs, children age out at a truly early age and have little to no support or guidance available to them. These kids often find themselves victims of crimes (including sexual assault) as well as in a position where they are homeless, commit crimes to support themselves, are barred from education and/or health care, etc… Often, these children face early and lonely deaths and no child should ever face such things. While we don’t claim to be perfect, we know that we have the resources, background, love and dedication to embrace our current and future children and bring them what they need. We remain open to all children and are thrilled to be on our current adoption journey.
* How did you come to know about Jack?
J&A – We first learned of Jack during one of our visits to the Reece’s Rainbow site. Though we’d been supporters of the work of Reece’s Rainbow for years, I had not been on the site for a while and decided to go take a look. We were instantly drawn to Jack and immediately started researching Xeroderma Pigmentosum to see if we would be able to meet his needs. We spoke with a doctor who met him during a medical missions trip several years ago, some other medical professionals, parents of children who have XP and representatives from a family support network. We knew that we could bring Jack the love and care he needs and deserves and we quickly officially got started on our adoption journey.
* What exactly is Jack’s condition? What does he need to have as a full a life as his condition allows?
J&A – Jack was born with an incredibly rare genetic condition called Xeroderma Pigmentosum (otherwise known as XP). People with XP have an error in their DNA that causes an inability of their bodies (particularly the skin) to repair damage caused by UV rays. These individuals have an extreme intolerance for UV rays and require total protection from the sun and UV producing man-made light (which is most other than for LEDs). People with XP are not “allergic” to the sun as their issue has nothing to do with an immune response. It is about their skin not being able to repair itself from the damage we all face every day from UV rays and most people’s bodies can handle just fine most of the time. Due to this intolerance, people with Xeroderma Pigmentosum face the very real risk of multiple skin cancers (metastatic) and premature death. Some people also experience learning difficulties, neurological problems, the loss of previously acquired skills (walking, talking…) and other areas of concern.
* Why can’t he get the care he needs where he is now?
J&A – XP is extremely complicated and it is very difficult to treat in the best of circumstances. In an orphanage setting with hundreds of kids to care for, it is impossible to give a child with XP the care that they need. Resources are severely limited and proper medical care is impossible to obtain in such a setting. While Jack may be loved by his caretakers and they probably want what is best for him, they cannot bring him what he needs. Most children with XP do not make it much past the age of 20 (while some live a bit longer and others, sadly, have less time) and each second that a child spends unprotected from the sun and other UV-emitting light sources brings them closer to cancer, other risks and, ultimately, a very early death. With so many kids to care for and a lack of information about the condition (less than 1,000 people are said to have XP in the entire world), Jack is going without the protective gear, medical care and educational resources (as well as other things) he needs.
* How do you plan to deal with and take care of his needs once he is home?
J&A – Families raising a child with Xeroderma Pigmentosum have a lot of things they need to do and we are blessed to be able to bring Jack what he needs. Aside from normal childhood medical care, children living with XP need frequent dermatological care (multiple checkups a year and more regular visits during periods of greater difficulties including cancers), special eye exams, neurological evaluations and checkups, possible educational interventions, specialized hearing tests and more. Families must obtain costly UV meters to test any and all buildings in which their XP-affected child may spend time. Children with XP need to be covered from head to toe with highly specialized UV-blocking gear at all times during which they may be around UV rays (from sun or man-made lights). Homes, schools and vehicles must have UV blocking tint applied to all windows and other such openings. People with XP can never be out in the sun unprotected (even with protection, time spent outdoors must be extremely limited) and can only safely be outdoors once the sun is completely set and they are away from dangerous lights. High SPF sunscreen and high quality lotions must also always be available no matter what the child is wearing. (The sunscreen is needed all over their bodies and the lotion is needed because the skin of people with XP is very dry.) Special routines and practices must be in place to help keep these children safe at school, home, doctors’ offices and wherever else they may go. Outdoor playtime is limited to after sunset. Some families choose to homeschool children who have Xeroderma Pigmentosum and others choose different educational options. No matter what, even more than in typical situations, parents of children with XP need to be experts in their child’s condition and care and be their children’s best advocates. It is unlikely that most parents will have access to doctors who have treated XP patients and there are very few experts on the condition because of its rarity. Our family is fortunate because we have access to the best medical care in the world and we are able to bring Jack the care that he needs. Jack has spent his entire life unprotected (he’s almost 8 years old) and will come to us with damage done (from not yet getting the care he needs) that we cannot undo. He may already have cancers that need treatment. He may have undiagnosed needs that need immediate treatment. Xeroderma Pigmentosum cannot yet be cured. However, we can get him treatment and hope that this will give him extra years – years to enjoy love, happiness, an education, medical care, hope, friendship and family.
* How can people help you bring Jack home as fast as possible?
J&A – Thanks for asking this (and all of your other questions too of course)! Jack needs home lightning fast because of his condition. While we have a love for his country of birth and great respect for those who have been caring for him, his medical, educational and developmental needs are clearly not being met. Jack needs medical care unavailable in his country of birth and, in order to have the greatest chance at survival, he needs to come home. People can feel free to join us on Facebook. Our main page i.d. is Our Lively Crew Angela and our fundraising group is Jack’s Pals (Help a Little Boy Come Home). They may also visit our blog at http://ourfamilysescapades.blogspot.com. Our Reece’s Rainbow page is http://reecesrainbow.org/49527/sponsorjack. (People can read more about Jack, the rest of our family and Xeroderma Pigmentosum on this site.) All are ways for people to keep up on our journey and rally around Jack. If interested in contributing financially, feel free to visit all of these online resources. (Donations through Reece’s Rainbow may be tax deductible.) Like most adopting families, we have the means to raise our children but don’t have the approximately $50,000 – travel costs included – it will take to get through this process all ready to go. Jack’s life is depending on getting home really quickly and money is the biggest barrier to that happening. We will do all we need to in order to get Jack home but we need your help in getting that to happen quickly enough to bring this precious child a chance at living at least a few more years. The hope is that once he gets to proper care and a family, he will live as long and as healthy of a life as possible. Can you help us as we work to bring all of this to Jack? If so, you will forever be in our hearts. Those who cannot contribute financially are still loved and treasured. You can pray, keep us all in your thoughts (especially Jack), help us spread the word or even start fundraisers in your own town or with your own circle of friends. We’re happy to have all of you along with us on this journey and please feel free to reach out to us if you want to communicate with us.
* How soon is it legally possible to have Jack home?
J&A – The “how soon” question is a bit tricky because a lot of the timeline depends on how fast paperwork is processed by the people whose desks it all lands on. We have a few steps to go still but are requesting medical expediting because of Jack’s needs. We have doctors writing letters to support that need. Jack’s life depends on getting home quickly. If all goes well with fundraising, we could possibly travel late March or April. It all depends on how much the powers-that-be understand and care about Jack’s needs and how his very life depends on their expediting of the paperwork.
J&A – Thank you and have a beautiful holiday season!
So as you have read, Jack really needs very specialised medical care, and Jon and Angela are well-positioned and are confident that they can give him that very specialised care he needs. Now it is simply a question of clearing paperwork and getting funding at lightening speed.
If they want to get Jack home by Spring, they will need your help.
First of all, join their Facebook group here https://www.facebook.com/groups/434610579939048/ to keep updated with their latest fundraisers. (You have to be invited to see this group so please send a request to Our Lively Crew Angela to join the group or leave a comment here with your FB name and i’ll send you the invite to join, you can also search for Jack’s Pals (Help a Little Boy Come Home) on FB).
They are currently holding flash auctions for such lovely items here https://www.facebook.com/events/387199551362096/ (You have to be invited to see this group so please send a request to Our Lively Crew Angela to join the group or leave a comment here with your FB name and i’ll send you the invite to join or search for Jack’s Pals Flash Auctions & Giveaways on FB).
They also have a wonderful giveaway running on their blog now. Contribute towards their adoption grant and stand a chance to win an IPad, DVDs, CDs and gift certificates. See here for details. http://ourfamilysescapades.blogspot.ch/2012/11/our-post-introduction-fundraiser.html
You also choose to simply donate towards their Family Sponsorship Page here. http://reecesrainbow.org/49527/sponsorjack
Please do share their story, Jack’s story and this post far and wide so more people can help. Please also pray for them, for the process to go as fast as possible and for funding to come in quickly. Pray also for Jack’s health, that he will stay as healthy as possible.
If you can help do a fundraiser or have any ideas as to how we can raise more funds to help bring Jack home, please please either leave a comment here or send a Facebook message to Our Lively Crew Angela.
Thank you so much.