# Sibling Story Book Template
A simple picture-book story you can adapt for the sibling of a child with Alström Syndrome. Two versions — one for younger children (ages 3–6) and one for older children (ages 7–10). Print and illustrate together, or use the text alone.
The goal isn't medical accuracy in detail. It's helping a child understand what's happening with their brother or sister and how their feelings fit into it.
How to use this template
1. Read the story first yourself to make sure it feels right for your family
2. Customize names, details, and family specifics by replacing bracketed text
3. Add or remove pages based on your sibling's age and what they need to hear
4. Illustrate together using crayons, photos, stickers, or printed images
5. Read together multiple times — repetition helps absorption
6. Use as conversation-starter rather than the only conversation
VERSION 1 — For younger siblings (ages 3–6)
A simple, gentle story. Each "page" is one short paragraph and an illustration suggestion.
Page 1
> This is [Sibling's name]. [She/He/They] is [age] years old.
Illustration: A simple drawing or photo of the sibling. Could be a self-portrait with help.
Page 2
> This is [Affected child's name]. [She/He/They] is [age] years old.
Illustration: A drawing or photo of the brother or sister.
Page 3
> [Sibling's name] and [Affected child's name] are a family. They love each other.
Illustration: The siblings together, holding hands or hugging.
Page 4
> Sometimes [Affected child's name] needs special help. [She/He/They] has something called Alström. It's not a sickness you can catch — like a cold. It's something that's been with [him/her/them] since [she/he/they] was born.
Illustration: The affected child smiling. Maybe with their hearing aids, glasses, or other equipment visible.
Page 5
> Alström makes some parts of [Affected child's name]'s body work differently. [Their] eyes don't see as well. [Their] ears don't hear all the sounds. [Their] heart needs special care.
Illustration: Simple body parts with friendly faces — eye, ear, heart.
Page 6
> But [Affected child's name] is still [him/her/them]. [She/He/They] still loves [favorite food]. [She/He/They] still loves [favorite activity]. [She/He/They] still loves you.
Illustration: The affected child doing something they love.
Page 7
> When [Affected child's name] goes to the doctor, the doctors are helping them. They check the parts of [his/her/their] body that need extra care.
Illustration: Doctor and the affected child smiling together.
Page 8
> Sometimes Mom and Dad spend more time on [Affected child's name]'s doctor visits. That doesn't mean they love [him/her/them] more than you. They love you both very much.
Illustration: Family together — all happy.
Page 9
> Sometimes you might feel sad. Or angry. Or worried. All those feelings are okay. You can talk to Mom or Dad about them anytime.
Illustration: A sad face, an angry face, a worried face — all friendly.
Page 10
> You and [Affected child's name] will grow up together. You'll laugh together. You'll fight together (a little). You'll love each other for a long, long time.
Illustration: Two siblings older, still together, smiling.
Page 11 (optional)
> Some questions you might have: > > Can I catch what [Affected child's name] has? — No. It's not contagious. > Is it my fault? — No. Nothing about Alström is your fault. > Will [she/he/they] always need help? — Some help, yes. Different help over time. > Will [she/he/they] always love me? — Yes. Always.
Illustration: A heart shape.
Page 12 (final page)
> The end. > > Love, > [Mom and Dad / Family]
Illustration: Family signature, hand prints, or a special drawing.
VERSION 2 — For older siblings (ages 7–10)
A more detailed but still gentle version. Can include real medical facts at an age-appropriate level.
Page 1 — About our family
> This is [Sibling's name]. This is [Affected child's name]. We're a family. Our family has a story that's worth knowing — about something called Alström Syndrome.
Page 2 — What is Alström Syndrome?
> Alström Syndrome is a condition that comes from a tiny part of our bodies called genes. Genes are like instructions that tell our bodies how to grow. Everyone has genes. Most genes work the way they're supposed to. Sometimes, very rarely, a gene works differently. That's what happened with [Affected child's name].
Page 3 — What it does
> The gene that's different in [Affected child's name] is called ALMS1. Because of this gene, some parts of [Affected child's name]'s body work differently: > > - [His/her/their] eyes — over time, they see less well > - [His/her/their] ears — over time, they hear less well > - [His/her/their] heart — sometimes needs special care > - And some other parts of [his/her/their] body too > > All of this means [Affected child's name] sees lots of doctors and uses some special tools.
Page 4 — But [Affected child's name] is still [him/her/them]
> Alström is part of [Affected child's name]'s story, but it's not the whole story. [She/He/They] is also: > > - Funny > - [Specific personality trait] > - [Loves what] > - [Hates what] > - The kid who [specific endearing thing] > > All of those things are who [she/he/they] is. Alström is one part. Not the most important part.
Page 5 — How [Affected child's name] got it
> [Affected child's name] got Alström because Mom and Dad each have one tiny copy of the ALMS1 gene that works a little differently. Mom and Dad don't have Alström — they're called "carriers." When two carriers have a baby, sometimes the baby gets two copies that work differently. That's how [Affected child's name] got Alström.
Page 6 — What about you?
> Lots of people wonder: do I have Alström too? > > If you don't have any of the things [Affected child's name] has — like trouble with light, eyes that wobble, hearing trouble — then you almost certainly don't have Alström. Mom and Dad and the doctors can talk to you about this if you ever want. There's no wrong question.
Page 7 — How you might feel
> Having a brother or sister with a condition like Alström can bring up lots of feelings. Other siblings have shared things like: > > - "I love them, but sometimes I feel left out." > - "I worry about them when they go to the hospital." > - "I'm proud of them for being brave." > - "Sometimes I wish things were different." > - "I feel guilty for being healthy." > - "I get scared when something new happens." > > All of these feelings are normal. You're not the only one who feels them.
Page 8 — What you can do
> Some things siblings can do that help: > > - Be your sibling's friend. Just like you are with anyone else. > - Tell Mom or Dad when something's bothering you. They want to know. > - Take care of yourself too. Your activities, friends, and dreams matter. > - Ask questions when you have them. Big questions and little questions. > - Help when you can — but you're not supposed to take care of [Affected child's name]. That's a parent's job. You're allowed to just be a kid.
Page 9 — What's the future
> [Affected child's name] will go through a lot of things over time. The doctors will help. Mom and Dad will help. You'll be growing up at the same time, with your own things. > > You'll be a brother/sister to [Affected child's name] for the rest of your life. You'll know each other in ways no one else will.
Page 10 — If you have hard moments
> If you have hard moments — feelings that are too big, worries that won't go away — tell Mom or Dad. Or tell another grown-up you trust. > > There's also a group called Sibshops that helps siblings of kids with conditions like Alström. Mom or Dad can find one if you'd like.
Page 11 — What we love about you
> [Personalized message from parents to the sibling]: > > _________________________________________________ > _________________________________________________ > _________________________________________________ > _________________________________________________
Page 12 — End
> Love, > > Mom, Dad, and [Affected child's name] > > [Date]
Tips for using this template
Make it personal
Add specific details that make the book true for your family. Inside jokes. Favorite places. Specific things the affected child does that the sibling loves.
Illustrate together
Even basic stick-figure drawings or printed photos turn this from a text into a memory.
Read multiple times
The first reading is rarely the most important one. Repeat readings — across weeks and months — let the content settle.
Make it ongoing
This isn't a one-time book. Update it as the children grow. Add pages when something significant happens. Keep it as a family artifact.
Notice their reactions
Some children engage immediately. Some need time. Some come back to the book months later. Follow their lead.
Conversations the book opens
The book often prompts questions or moments. Be ready to talk about:
- Will my brother/sister die? — Honest answer at age-appropriate depth
- Did I cause this? — No, definitively
- Why did this happen? — A genetic event, not anyone's fault
- Will I get this? — Almost certainly not (with explanation)
- Is it contagious? — No
- Will my brother/sister always be like this? — Things change over time, but they'll always be your sibling
If a question comes up that you don't know how to answer, "Let me think about that and get back to you" is a perfectly good response.
Other resources for siblings
- Sibshops (siblingsupport.org) — workshops for siblings of children with disabilities
- Books for siblings:
- Different Like Me — for young children - Views from Our Shoes — sibling experiences - The Sibling Slam Book — for teens
- Patient organizations — ASI and ASUK have sibling-specific programs at family events
- Therapy — for siblings showing significant distress, a therapist who works with chronic-illness families helps
A note for parents
Writing or reviewing this book together with your sibling can be a meaningful family activity. It tells the sibling: We see you. We know this is part of your life too. We're going to talk about it.
Many siblings of children with rare diseases describe feeling unseen — like the affected sibling's needs took all the family attention. This book is a small antidote. It's not enough on its own, but it's a start.
Related reading
- Supporting Siblings of a Child With Alström Syndrome
- Talking to Your Child About Alström Syndrome
- Risk to Siblings of a Child With Alström Syndrome
This template is for informational and family-life purposes. Adapt to your family's specific situation, values, and culture.