The materials are to be used expressly for your own personal, non-commercial, informational, and educational use.
The materials are not to be changed in any way. They’re to be used as printed.
here4U, Inc, is not responsible for any errors or omissions or any consequences which may result in use of the information in this site. You are always advised to check with your child’s healthcare provider before making any changes regarding your child’s medical care.
Dear Parents, Family Members, and Friends of Babies & Children with Complex Medical Conditions—
You’ve likely gotten to this website because you’re worried, confused, frustrated, or scared for your child’s health and well-being. Your child may be chronically or seriously ill, or have been diagnosed with a complex medical condition, and you’re unsure where to turn. You have lots of questions and not a lot of answers.
You may be feeling alone and very overwhelmed with all that you may be facing. We’re here to help you. This website has been developed with the questions and needs of families of children with medical conditions or illnesses like your childs in mind. In fact, some of the creators of this site have children with these conditions, have lost a child through such illnesses, or have provided support to family members who’ve had or lost a child through illness or accident. What we’re trying to say is, we know what it’s like to be in your shoes and we want to help walk this journey with you as you plan out where to go and what to do from here…for you, for your child, and for the rest of your family.
We’ve talked to and listened to lots of families with seriously-ill children. We’ve heard what kinds of questions they’ve had and what’s been helpful…and sometimes, not so helpful, in situations like these. As a result, this website is being developed around what we’ve learned from other families like yours. So please feel free to use as much or as little of what’s offered here to help you, to help your child, or to help a family or friend with a child who is seriously or chronically-ill, or who has a complex medical condition. And if you can’t find the information or supportive help you’re looking for on one of these web pages, please feel free to contact us. You do not have to do this alone.
Your Supportive Care Partners in this Journey,
The here4U Family
Ann Fitzsimons, BS, MBA-Executive Director
Dr. Joseph Custer
Emeritus C.S. Mott Children's Hospital
Laurie Forbes, Five Lakes Partners
Rebecca Konarz, LMSW, BS
Willow of Wonder Child & Family Therapy
Patricia Williams, MS, CHE
Global Health Services Network, LLC,
Anne Kathrine Ryan
Families and children living with chronic, complex, or serious medical conditions/illnesses are entitled to education about their disease, information about the risks and benefits of treatment, and what the likely outcomes will be.
We will strive to help equip you with the skills and resources needed to find and/or ask for the information you need to make educated care choices for and/or with your child.
Families and children living with these serious or chronically-disabling conditions should be encouraged, and are entitled, to be involved as partners with the care team, in shared decision-making with their child’s healthcare team and other medical professionals, and in planning treatments for their child.
We will share what other families have told us has been helpful to them in becoming partners with their child’s medical team so that you, and your child, can find ways to have a voice in this process.
The extended family suffers, as well as the child, when a serious illness or a chronic disorder strikes families. Pediatric patients, and their extended families, are entitled to compassionate and expert medical care, effective control of pain and physical complaints, and emotional and spiritual support.
We will identify resources within and outside the healthcare system, which will help you advocate for this kind of care and access to these services for your child and the rest of the family.
Experience has taught us that children should know what is happening to them. The child’s voice, whenever and wherever possible, should be included into this decision-making process. Even very young children should have some involvement in discussions about what is happening to them. The sick child has a right to have a voice and to be heard in helping make decisions about his/her own healthcare.
Part of the support we will offer will be directed at helping you to learn ways to have and encourage open communication with your child, to advocate for your child to have a voice in his/her care plan discussions/decisions, and to empower your child to speak up for him or herself, when willing and able.
And, importantly, we want to help “add life to your child’s years, not simply years to your child’s life” (per the American Academy of Pediatrics’ Committee on Bioethics).
here4U, Inc. is a collaborative partnership of parents and healthcare professionals which has been established to support families of chronically or seriously-ill babies and children from the time of diagnosis and across their lifespan.
We know that the parental concerns about what is best for your chronically or seriously-ill child, or child who has a complex medical condition, are not always addressed.
So we’ve made it our mission to embrace, educate, and empower you, your child, your family on this medical journey through the provision of a variety of supportive care resources.
here4U is focused on three key projects to better help and support families like yours; however, these are all still in the early stages of development. So, please keep checking back as we continue to update our supportive care offerings and resources for you.
Our two main initiatives include:
Creating this online website (and eventually, a web-based online community as part of this) as a "safe place" for education, idea exchange, and intimate conversations among and with families like you on complex medical paths with their child; and
Conducting research to give voice to kids with medically complex/serious health conditions, and their families, by understanding what they need, want, and desire in order to be better supported inside and outside of the healthcare system.
However, we are ALWAYS open to hearing from you about thoughts, ideas, questions, things you’d like to see addressed or built in as part of this website, so please feel free to contact us at ann@here4U.net We want this to be YOUR site, so please help us build it to be what YOU want and need it to be. Thanks!
In December 1999, my life was forever changed with the birth and death of my infant niece, Riley Ann Dooley. Born with a malignant brain tumor, which went undiagnosed, Riley graced our lives for two weeks during Christmas and then left us, and this world, on January 2, 2000. During this time, I reached out to a dear friend who had lost a son, Dylan, also at two weeks of age, for an “instant education” about what to do when you have a baby “born dying”.
I asked what would be important for my sister and her young family to do while Riley lived, and as (more?) importantly, about what she didn’t get to do with and for Dylan, that she wished she had. Her sage wisdom and counsel was invaluable and I believe our experience with losing Riley was better because we’d learned from someone who had walked a similar path before us.
The power of sharing these stories and experiences with others when going through a medical journey with a child, no matter how big or small, young or old the child is, was not lost on me. It became the impetus for co-founding Compassionate Passages, a non-profit which was all about advocating, educating and conducting research to support dying children and their families.
This site was developed by and for families of babies and children with chronic or serious illness or complex medical conditions, and by those who care for them. It’s meant to help you ask yourself the important questions about what YOU want for your child’s care AND also what your child wants. It’s also designed to help provide some guidance on key questions or issues you may be facing at this point in your child’s illness. Feel free to use this site in whatever way works for you and also to take advantage of the other resources it links to for further information.
While Compassionate Passages was making much progress in its mission to be the voice for better supportive care for dying children and their families, I had to leave the organization as I was experiencing my own caregiving struggles and losses, providing hands-on care for my own seriously-ill and dying family members-- my Sister, Mom, Dad, Mother and Father-in-Law, and Brother-in law. Each of these illnesses and deaths brought me more lessons and closer to what it was like to be in this world of caring for a loved one who is chronically-ill, seriously-ill, or dying, and I knew I had to do something more with all of this.
In 2013, I formed a new non-profit, called here4U. here4U gets me back to YOU, the families and children, I so long to listen to, be here for, and just help navigate and support on your own complex medical journeys with your child or children. I know how hard it is to do this kind of hands-on care for those we love, while managing everyone, and everything else, that still has to be taken care of—a house, other children, a spouse, work, sports, homework, grocery shopping, paying bills…the list goes on. While here4U started with the vision of building a pediatric transitional care/hospice/respite house for our seriously/chronically-ill kids, and their families, in Southeast Michigan (which we’re also working on), it has expanded to so much more!
The here4U Family--a dedicated group of parents and healthcare professionals who have or care for babies and big kids with complex medical conditions, now also want to provide a 24/7 online resource for families like yours…a “safe place” for education, idea exchange, and intimate conversations with other families of children facing complex medical paths. It is our hope that you will find the support you need here when questions, issues, and challenges arise on this medical journey with your baby, infant, child or adolescent. You are not alone. We are here for you and will journey with you as we work to become a caring and compassionate, yet comprehensive partner (and website), that embraces, educates, and empowers you, your child, and the entire family, at every step of the way.
With all our love and support,
Executive Director and Founder of here4U, Inc & Riley Ann’s Aunt, and the entire here4U Community