 Aloha everyone. Thank you for joining me on Think Tech Hawaii. I am Shonda Park, your host for Money Talks. July is recognized as Buried Parents Awareness Month, and this month is dedicated to raising awareness of the support that is necessary when a parent endures the loss of a child. Today, my guest is Jonah Guo. She is the Executive Director of HUG. HUG is the acronym for Help, Understanding, Group Support, provides comprehensive long-term services for families and their children birth to 21 years old who suffer from widely diverse life-threatening illnesses. Jonah's professional career spans over 40 years. In the Hawaii's nonprofit sector, she has served on various government commissions and community advisory boards, and she is currently serving on the board of directors of Hanoi, Hawaii Association of Nonprofit Organizations. She has 20 years of executive leadership experience and has been the Executive Director of HUG since 2013. Jonah, welcome and thank you for being on the show today. Thank you, Shandra. I'm happy to be here. Yes, and it's great meeting you for the first time today. Wonderful. I wanted to share with you how connected we are on this island, and that I interviewed Gabby Govea from Let Grace In. She's actually the Executive Director and Co-Founder of Let Grace In, and she was the guest on my show on July 11, and I only recently found out that she's also a HUG's parent. So of course the both of you know each other too, right? Yes, definitely. You know, Gabby and her husband and their whole team are just wonderful people who unfortunately lost their son, and she has turned that grief into something very positive to help other bereaved families as well. So we're not only, she's not only a part of our ohana, but she's also a resource for our families as well. That's wonderful. I love Gabby and her whole family and I'm very fortunate to, you know, have this opportunity to get to know you as well and to get to know about HUG. So first, would you like to share about the mission of this local private non-profit organization called HUG? Yeah, our mission is to strengthen Hawaii's families when they have a child who have a life-threatening illness. They just face so many challenges emotionally, financially, and we're here to support them as they go through this journey of up and downs, emotions. Just, you know, most people have, most families already have challenges, but when they have a child with an illness, it's a journey that can last as long as three years to remission or a lifetime or bereavement when they lose their child. Yes. Thank you for sharing the mission of HUG's and in that mission statement, a financial hardship is mentioned. So when a child is diagnosed with a life-threatening illness, parents will have to take off of work or even quit their job in order to be with their child in the hospital and resulting in a substantial loss of income and medical bills can range from thousands to millions of dollars and the healthcare insurance may not cover. So what do the families do in these type of financial situations? Well really, you know, I know the financial challenge goes on for such a long time for them and we try and provide them with direct assistance, whether it is a food basket so they can have food for their family or connecting them with resources in the community that will help pay their rent, that will help them find jobs, all kinds of resources. We have a special program called HUG OKLE and HUG OKLE means to navigate. For many of these families, you know, life was happy and then their child, they're diagnosed all of a sudden with maybe cancer or cardiac issue or something, you know, mom quickly decides she's going to stay home and care for their child and as you said, that loss of income for that. In the meantime, they are crazy worried about, you know, how they're going to pay the bills. We had a gentleman whose child in the course of their treatment had amassed a $200,000 hospital bill and so we, in working with him, he had never stopped to think that maybe he could negotiate a payment plan with the hospital and so we connected them together and he's now paying off his $200,000 bill on a special payment plan just to ease that pressure that they have. Financially too, you know, if in case their child needs treatment or participating in clinical trials, it's airfare to go to the mainland for that. It's trying to just keep up with the regular daily cost of living for their other children as well. So they face tremendous challenges and what we try and do is work through that, help them find alternatives and also provide them with some direct assistance. And this is all through your Ho'olkele program? Yes. Yes, it is through our Ho'olkele program. We even have a partnership with Aloho diaper and they, we distribute diapers for our families who need them. We have an eight-year-old boy with cerebral palsy and he's unable to speak, walk, any of that and although the dad is working full-time, mom has to stay home and care for him because she doesn't have additional resources of support for other family members. And so we distribute diapers for him, although he's seven. He's not able to use the bathroom independently. And so we distribute diapers for her every month. That's wonderful that these families are provided the resources that, you know, hugs has and I'm sure when the families come in, they have no idea about the available resources until coming into contact with hugs, correct? Yes. But for the most part, they don't. You know, as your first concern is keeping your child well and as best as you can, trying finding ways medically to help improve the health of your child. That's a main concern. Yeah. But at the same time, you know, the cost of living is so high here, it is a challenge for them. So with our whole Kelly program, we just ask what they need, walk them through it. We help people apply for the first time in their lives for food stamps and walk them through the application form and make sure it gets submitted. You know, just to leave that financial stress that so many of them have. And I know that's a huge help on families because financial stress can be such a heavy burden when they're already suffering, you know, the emotional and physical stress as well. Yes. Very much. And E that hugs celebrated 40 years this February. Congratulations. Well, thank you. Yes, we started 40 years ago in 1982 as a formal nonprofit. Actually, it was started before that by a group of volunteers from a church whose one of the members in the congregation had a child with leukemia and they saw all the stresses and challenges this family went through. So they banded together and provided little things like a pot of stew and some time out for the parents and all of that. And that is pretty much our legacy that we tried to keep for the past 40 years with formal programs, but also that sense of neighborliness, compassion, and just helping these families out where they can. That's wonderful. That's really amazing services that's provided by hugs. And will you explain about this special family event called Joyful Moment? Well, we one of the things that we provide is opportunities for families to gather in a joyful moment and a joyful fun activity because many of them have few of those as they go through their journey. So it's a time for them to feel like they are they can have fun and it's okay. You know, they can feel normal and it's okay. So we have different activities throughout the year. There's special programs just for moms, special programs just for dads and even siblings and family events that we do. So these people can meet other people who've walked in their shoes, who have a really true compassion for understanding what newly diagnosed families will be going through and offering little hints along the way. And we do many of these activities to create joyful moments, but also that connection with their unique set of peers. That's a very unique program and I truly believe that that connection and understanding with a group of people, especially for new peoples. I want to say that they're probably feeling guilt of, you know, any joyful moments that they have or feeling of normal through the diagnosis of, you know, an illness, possibly a terminal illness, the whole family, they lost their normalcy, right? And any time that they feel joy, I'm sure that there's a lot of guilt connected with that. So it's a really beautiful that you have an event called joyful moments where the families can gather together. Yeah, you know, it is. There is a lot of guilt. There are lack of understanding and social isolation often that happens with these families, especially with the brothers and sisters. They feel like nobody else, none of my friends have a child, a brother or sister who is sick. And so we provide services for every member of the family, in some form or another, as well as the whole family. Thank you for that. And tell us about the annual celebration of life that started 12 years ago with hugs. And in particular, the partnership formed with Sunset Ranch about six years ago. Yes, you know, it is very unfortunate that some of our children are not able to survive their illness. But we know that, you know, they are strong. They are dear in their hearts for their family members. And so we started an annual celebration of their lives a number of years ago. And when we, we would go to different locations around the island and such. But we started a partnership with Sunset Ranch at the top of Pupukia on the North Shore and on this beautiful ridge overlooking the North Shore and Waimea Valley. And it was such a peaceful place. The owner so generously offered the top of the ridge as a place where families who have lost their children come and plant a poetry in their honor. And we've been doing that for the past five years. The poetry in particular, because it symbolizes the strength that their children have shown during their short lives. It is really a peaceful and spiritual place when the breeze comes by. You can almost feel the presence of the children. And it's a great, great opportunity for families who have lost their child to come and help have this time to help support their grieving process. So we have now have blessed that place with the partnership with Waimea Valley Park. And we have a number of trees planted. And we are now moving on to our second Memorial Garden this year to for the new families who have lost their child. It really is a place of great significance for them. And our role is to help them play a little part in that grieving process. Joan, I don't think I've ever been to Sunset Ranch. Is that annual celebration going to be sometime this year or has it happened already? It will be happening in August. If you pass Waimea Bay at the food land, the traffic lighted food land, you go all the way up the hill to the end. It's next to the Boy Scout Camp. And that's where Sunset Ranch is. Sunset Ranch is actually a venue that's often used for weddings. And they have a stable of horses and such, but a very expansive area. But walking past that expansive area is a trail to the ridge where our Memorial Garden is. And we do this every year. Okay, will you be able to share more information about when in August? I would love to be a part of it even if it's a volunteer. Sure. It will be on Sunday, August 21st from 1 p.m. And we have different activities for their entire family, our Buri families. Something for the brothers and sisters to do, like painting rocks with messages on it that they can hike up to the area and put rocks in front of their sign. Every child has a little plaque in front of their tree. And so we go up there to water and provide a blessing for the children and have a little program and ceremony for them. Thank you and thank you for sharing that information. I wanted to ask you also, you mentioned earlier about airfare. So I know that you have an airfare assistance program. You want to elaborate on that? Sure. For many of our families, some just urgently have to travel to the mainland for medical treatment. Literally, we have a child who, only one week old, their mom had a cardiac condition and literally got on a plane and flew to Stanford Children's Hospital for treatment. And we started this program because we knew that most people's insurance will pay for a parent and the child, but the other parent, the other siblings all have to stay home. And for some of them, it's pretty shocking when you have to move that quickly. Understanding what's going on, this particular child had such a bad cardiac condition. She actually stayed on the mainland for 10 months. And mom and the child was there. Dad and the other kids were at home. And that takes a toll on the family relationship. That's a long time to be said. That's a long time. But she was waiting for a heart and to have a transplant. And so when that time for the transplant came, we provided for dad and the children to fly up to the mainland, to the hospital, so that they could be there in the surgical waiting room during the surgery and just hold each other's hand during the process and make sure that they could see that their little sister came out okay. And research has said that having family support during these times is really critical. And it actually impacts the health outcomes of the child. Yeah. So we have a, we write grants so we can have some funds to fly families up. We also have a Hawaiian Airlines charity account where people can donate their miles to help our families get to the mainland when they need to. That's wonderful. That's such an amazing service that's provided because like you just shared the 10 months separated. That's such a long time for a mother to the other child that's staying home while she's caring for the child that's ill and father and sibling. So that's such an amazing program with that airfare assistance. And there's other programs that you have. I was reading that hugs coordinates about 50 activities and events throughout the year. That's a lot. And it includes some mom's nights out, dad's night out, date night for parents, and sibling activities, and even more. So you want to share a little bit about that and how you're able to put on about 50 annually. Well, we do have mom's night out. You know, we know that every member of the family reacts to the situation or deals with the situation very differently. And finding peers, all moms, for example, can go out, have their couple hours of fun without the worry of dishes, dinner, other kids, homework, all of that other stuff. And bond with the ladies who also have a child with a life-threatening illness. This is their time out so they can replenish and refuel themselves. And so we have activities for them. And dads kind of react to the situation differently. You know, many of them feel they have to be strong for the entire family. You know, they can't talk about stuff. And when we gather the dads together, they all bond and start to share how hard it is for them in their role as the dad. And it's a moment of fun, right? So we take them bowling or we take them out to dinner so they can meet other dads and start sharing with each other and finding that support. Siblings are not to be forgotten. Siblings are often time, often forgotten actually, you know, very inadvertently, but all the attention gets on their ill brother or sister. And these children have a lot of fears of their own that they don't want to express or can't express. They have a lot of worries about, you know, will my brother or sister live? And what am I supposed to do? You know, and that affects them behaviorally academically sometimes. And so what we try and do is to have include them in some of our other activities as well. But we have a special camp just for siblings where they spend three days with other siblings, develop their own peer support network and kind of process through their feelings and find ways to deal with, to cope with the situation, build their sense of self-esteem and sense of courage as they go through this journey as well. We have a monthly, what we call respite and it's a time in which the ill child if able to as well as their brother and sister can come and be among other kids just like them and feel that sense of normalcy, feel that fun that they don't sometimes get because some of them are not able to go to regular school. And then mom and dad have a date night, a very rare date night. We've had parents say, oh, we haven't had a date night in the last three years since my child got ill. And so it gives them some time out and time to strengthen their own relationship. And we have a lot of special events like our celebration of life, like Wet and Wild is giving us free passes for our families to go to Wet and Wild for an afternoon. So we have all these special events and it amounts to about 50 a year because our moms and dads, our respites, our family events, they're held every month. And we can only do this because of the wonderful generosity of the community. People who volunteer to be buddies with our kids during respite, companies who will help offset expenses of meals and other activities and engage their employees in doing service to our families. We really can only do this with this wonderful community service effort by the community, individually, organizationally. We have a very small staff to try and do all of these things for almost 400 families throughout the state of Hawaii. That's about 1,900 family members to stay in touch with them, to provide these services, to help them through their journey. And so it's amazing. We don't have any government funding to support us. So everything that we do is supported by donations and grants and that kind of thing from the community. All of our services are free. We don't want to add another financial challenge to their already big financial challenges. So everything is free for our families. And it's so special how Hawaii somehow, even if families are struggling to make ends meet, working two to three jobs, somehow Hawaii is so beautiful that the community will come together and we are still so giving in times of needs. And whether it's monetary or volunteer work, I see that you have rounded up over 750 volunteers, which is beautiful. And I love that hugs really addresses the families together and also individually, that you take care of the mom separately, you take care of the dad separately, you take care of the siblings, and then you take care of the families all together. So it's such a wonderful and beautiful organization. And I know that you said that you're here locally. In Hawaii, you do service just the outer islands right here on Oahu and you also service the outer islands. And it's so important that what you provide to families so that they feel supported and they know that they're not alone. And so is there any last minute shares that you want to give about hugs? Well, you know, we've been around for 40 years and we're hoping to go for the next 40 plus years. As I said, the community has been so generous to us. Just a little story that maybe about 15, 20 years ago, a group of hugs parents sat around and talked about maybe coming up with a better name, we were called the Young People Support Center, which is pretty pretty unexciting. And so so they did a focus group. And the key thing how we got our name hugs is that one parent said, you know, sometimes you just need a hug from someone because they talked about words like help, they talked about support, they talked about understanding. And that's how the name of hugs came about. And so throughout our organization and our relationships with the community and relationships with with our families, it's about giving hugs in different ways. Hugs is perfect. Don't change that. And Joan, I see that hugs is going to exist for many more 40 year increments and that hugs will help millions of families. So thank you again for being on the show. I'll see you all next time next month on Think Tech Hawaii. Thank you. 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