PLAYING WITH MY THREE CHILDREN, OBLIVIOUS TO THE LIFE-CHANGING NEWS I WOULD RECEIVE LATER THAT DAY. I WAS THEN TOLD MY CHILD HAD AN ULTRA-RARE DISEASE. I FELT LIKE I WAS SLAMMED IN THE CHEST AND MY WORLD WENT SPINNING.

Waking up the next morning, I didn't feel like myself, nothing seemed real and I had no idea what to do. I looked at my child and, from all outward appearances, everything looked the same as it did 24 hours ago when everything was fine. But it wasn't fine and there was no one that could give me the information I needed. One question above all others that I was desperate for answers was, "What do I do now? " Finding out your child has been given a tough diagnosis is not something you can prepare for and the next steps can be just as hard. A few insights from what I did and what I wish I would have done.

WHAT DO I DO NOW?

Breathe. Deep breaths over and over. Take some time to yourself and try to clear your mind. It is absolutely normal for your brain to be racing with questions, frustration and fear.

1.Try to clear your mind as much as possible and grab the closest pen and paper.

2.Write down everything that comes to mind. The questions you have, what you are afraid of and any thoughts coming to you.

3.Take your list to someone you trust to help you read through it. Begin to organize your questions with your most important needs first. As you begin to work through your list, your most important concerns will become clearer and will be the starting point for your education.

4.Talk to your child's doctor and care team about the medical concerns you have. Be honest and frank with them—let them know this is overwhelming and you are going to need to ask a lot of questions, some over and over. Although this may be a brand-new situation for you, your child's healthcare team will have experience with newly diagnosed children of various disorders.

5.Work with the healthcare team to help you determine the next steps on the clinical side.

HOW DO I TELL MY FRIENDS AND FAMILY?

At this point your phone is probably blowing up with concerned texts, messages and emails, especially if your child has been in the hospital. Your natural reaction is to respond to every single message, but it can be exhausting and emotionally draining. Ask someone to be your point of contact for a short time. Provide them with a list of contacts who need a status update and let them know you are not able to respond immediately. Send your point of contact updates and let them get the info out. Have them help you manage calls and messages, visits to hospital and any matters at home. Right now, focus on you, your child and immediate family members.

WHAT DO I TELL MY FRIENDS AND FAMILY?

Say as much as you feel comfortable. Diagnosis name, a brief description of it and outcomes. Work with your doctor's team to provide you with a trusted source of information on the diagnosis and send this link to your family and friends. Let them read about it and let them know you can answer questions when you have answers and when you have time. In this day of tech savvy friends and family, they will be doing their own research and forming their own opinion – remind them that there is a lot of medical misinformation online so be sure to send them to reliable and trusted informational sites. Remind them that you don't have all the answers yet but will let them know as you find out and that their patience as you work through this is needed.

LIFTED UP: If your child's diagnosis has a foundation or support group, JOIN IT. The most supportive outlet for you is to connect with people who have previously gone through exactly what you are experiencing.

HOW DO I FIND SUPPORT?

Ask! As parents, we all feel like we can handle everything on our own. But this is not something that should be dealt with alone. Trust me— you need support. You need support from your family, your friends and from your care team. Tell them what you are feeling and what you need, even if you're not sure what you need right now. Be open and honest and let them know that you are struggling.

Your care team can provide clinical support options, social work, therapists, and medical staff that can help you. Your family and friends can offer support with helping with family schedules, home responsibili ties and daily tasks. If your child's diagnosis has a foundation or support group, JOIN IT. The most supportive outlet for you is to connect with people who have previously gone through exactly what you are experiencing. Ask questions and take them to your care team for clarification and understanding on how it may impact your child's health.

REALITY CHECK

For the first few months of my child's diagnosis I felt like I was drowning. There was so much information to process, especially being thrust into a medical and science world with terms and words that I couldn't pronounce, let alone understand. Moreover, I still had a family to manage, children to care for, and bills to pay. Life doesn't slow down when you have a newly diagnosed child – it becomes overwhelming. In hindsight, I felt like I should have reached out more. I know I should have asked more questions, but most important, I should have learned to not try to do it all.

The day after getting a new diagnosis is the first day of your new reality and your family's new lifestyle. It's not going to be easy, and you are not going to have all the answers when you want them. You will experience fear, frustration, hope, and the most intense roller coaster ride of highs and lows you can imagine.

You are not alone. You have support and resources available to you. You just need to give yourself permission to ask for help – real, tangible help – and time to comes to terms with your new world •

ABOUT THE AUTHORS: Carrie Ostrea, principal in Ostrea Consulting LLC, is a rare disease advocacy strategist working with nonprofit and industry organizations in the rare disease space. She is also the Executive Director and CoFounder of the Little Miss Hannah Foundation, a 501(c)3, non-profit organization which was created to honor her three-year-old daughter, Hannah, who lost her battle to Gaucher Type 2/3, an ultra-rare genetic disorder. Anne Bruns, is a rare disease advocate and speaker focused on creating relationships to improve the quality of patient engagement in the rare disease space. She is a leader for Utah Rare, a coalition for rare disease stakeholders and the former Executive Director of the Atypical HUS Foundation. She is the mother and caregiver to Ethan, her son and Atypical HUS rare disease hero.