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A day in the life of: Austin Reid

A day in the life of: Austin Reid

by | Sep 20, 2025 | CGAW | ICGAD, Day in the life, News, Silver-Russell Syndrome

A day in the life of: Austin Reid

 Austin, age 6

Growth condition: Silver-Russell syndrome (SRS)

Typical morning: Struggling to get him to get dressed and eat breakfast before school like any other 6 year old…try to get protein into him if possible. Omelette is the favourite right now. 

Typical afternoon: After school Austin loves his swimming lessons and also goes to an after school club. He’s very active as a child and always on the go. He loves riding laps around the garden on his bike.

Typical evening: It’s still a battle sometimes to get him to eat his dinner, but afterwards he has his growth hormone injection, before shower and bed. He has just started reading so we take turns in reading for bedtime.

My favourite thing to do is: Sailing, skiing, dancing, bike riding.

My least favourite thing is: Writing, and listening (standard 6 year old challenge!).

The best thing about having SRS is: People underestimate me all the time and then are surprised what I can do! For example skiing for 6 hours a day up and down mountains.

The most challenging thing about having SRS is: Having different length legs and not always being able to wear the shoes I want. Also being too skinny and not having enough muscle. 

One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: There are good days and bad days but your child will surprise you and will take you on a journey!

One thing I want to share with others about life with a growth condition is: It’s difficult to get adult time away from kids who need daily injections when you have no other family as we can’t ask someone else to do the injections.

A day in the life of: Growth Hormone Deficiency

A day in the life of: Growth Hormone Deficiency

by | Sep 19, 2025 | CGAW | ICGAD, Day in the life, Growth Hormone Deficiency, News

A day in the life of: Growth Hormone Deficiency

Age 21 months

Growth condition: Growth Hormone Deficiency (GHD)

Typical morning: I eat breakfast with my older sister, some days I enjoy my breakfast, other days I don’t have much appetite and I eat breakfast gradually throughout the morning. Mum and dad have to make sure I have eaten because I’m only able to fast for 10 hours over night to make sure my blood sugar levels don’t drop too low. I love listening to my tonies (audio stories) with my sister at breakfast time.

Typical afternoon: After my midday nap, I usually play at home or out and about. I have a special yogurt to eat with lunch or as a snack which gives me extra calories and nutrients to help me grow.

Typical evening: After dinner, my sister and I watch my favourite tv show Pocoyo. This helps keep me still whilst I have my daily injection. My injection doesn’t bother me, I hardly notice it. Pocoyo helps to distract me. My family are really proud of how brave I am. I have some extra vitamins and formula before bed to make sure I’m getting everything I need.

My favourite thing to do is: I love shoes, I’m always trying on different shoes I can find at home. I also love climbing and going on my bike. I love trucks and cars and one of my favourite things to do is go outside and look at the vehicles pass by. 

My least favourite thing is: I don’t like brushing my teeth! This is way worse than my daily injection! 

The best thing about having GHD is: I’m lucky that my growth condition can be treated and I am under a really supportive medical team to help me grow and develop. My growth condition has given me resilience and I will grow up knowing I can face any challenge in life. 

The most challenging thing about having GHD is: I’ve got lots of medical appointments and sometimes I get anxious, but I’m getting more used to doctors and nurses. 

One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: Don’t forget to enjoy your child in the present because you’re constantly worried about what their future will look like. 

One thing I want to share with others about life with a growth condition is: Comments about height can have a profound impact on individuals with a growth condition, especially when those comments are insensitive or repetitive.

A day in the life of: Myles Tucker

A day in the life of: Myles Tucker

by | Sep 18, 2025 | CGAW | ICGAD, Day in the life, News, SGA

A day in the life of: Myles Tucker

 

Myles, age 7

Growth condition: Small for Gestational Age (SGA)

Typical morning: Playing in his room whilst “mama” makes my/his breakfast, watching videos of himself on the iPad or posing for the camera whilst he enjoys his breakfast.

Typical afternoon: School, lots of therapies and fun times with my friends. Days outside on the field.

Typical evening: Shower in my new wet room (just moved house into adapted flat). Story time, lots of cuddles and massage therapy before bed.

My favourite thing to do is: See the outdoors. Crawl in meadows. Sensory play, bubbles & balloons. Hydrotherapy & he loves his standing frame.

My least favourite thing is: Beach/Sand he doesn’t like the texture of it. Loud noises / fireworks (he is deaf and this scares and startles him).

The best thing about having SGA is: Fitting into smaller clothes.

The most challenging thing about having SGA is: General public presuming he is a baby because of his height. Being smaller than class mates in school despite being the eldest in the classroom. Cannot walk, so growth condition alongside affects his ability to see things greatly.

One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: Make use of the Child Growth Foundation – they are a fantastic charity and very caring. It gives you the chance to meet parent carers living such similar lives. In turn feeling less isolated.

One thing I want to share with others about life with a growth condition is: Every day is a challenge (sadly child has a life limiting and progressive disease) but with his smile and strong determination I know he can take on anything that comes his way with courage and will.

A day in the life of: Lorelei “Kiwi” Smith

A day in the life of: Lorelei “Kiwi” Smith

by | Sep 16, 2025 | CGAW | ICGAD, Day in the life, News, Sotos Syndrome

A day in the life of: Lorelei “Kiwi” Smith

Kiwi, age 8

Growth condition: Sotos syndrome

Typical morning: Kiwi is usually cuddled up under her favourite blankies and her stuffed animals, and removing her isn’t always easy. I change her, get her dressed, and I do her morning medications and her morning formula in her feeding tube. If it’s a weekday, she goes to school. She is in 3rd grade.

Typical afternoon: Sometimes she’s home playing with toys and watching her favourite show, or she’s on her way to one of many doctor appointments, an outing with family, or school.

Typical evening: Kiwi spends time with her big brother, plays in the sink sometimes while Mom starts to get dinner prepared, and watches her favourite show. She has her night-time medications and pm tube feeding, then she rides her stair lift up to her bedroom and gets tucked in for bed.

My favourite thing to do is: Watch Puppy Dog Pals or play in the sink (I love water!).

My least favourite thing is: When I have to stop doing something I’m really enjoying. I don’t like having to stop!

The best thing about having Sotos syndrome is: At 8 years old, I’m already almost as tall as Mommy, so that’s pretty cool!

The most challenging thing about having Sotos syndrome is: Frequent wardrobe changes, Mommy needs to buy new clothes all the time because I outgrow everything so fast.

One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: Try to ignore people out there who might stare a little too long or make comments, their ignorance isn’t your problem.

One thing I want to share with others about life with a growth condition is: It’s a unique journey!