- Maci Winters is just 99cm tall and wears clothes with an 18-24 month label
- Has a form of primordial dwarfism called Russell-Silver Syndrome
- Condition means the body is smaller than it should be even before birth
- Those affected – 1 in 100,000 babies – also find it difficult to gain weight
By
Anna Hodgekiss
07:34 EST, 23 December 2013
|
11:11 EST, 23 December 2013
A six-year-old girl has a rare condition that means she’s the size of a two-year old and weighs less than two stone.
Maci Winters, from Pontefract, West Yorkshire, is just 99cm tall and wears clothes with an 18-24 month label (The average six-year-old girl is 116cm tall and weighs over three stone).
Maci was born with a rare genetic condition called Russell-Silver Syndrome, a form of primordial dwarfism that affects 1 in 100,000 babies.
Maci Winter (with her parents Lena and John and younger brother Ashton), has a rare condition which means she’s the size of a two-year old and weighs less than two stone. Her younger brother is already taller than her
Tiny: Maci’s condition means she wears clothes designed for a two-year-old and excels at hide and seek
The body is smaller than it should be even before birth and those affected also find it difficult to gain weight.
But despite being smaller than her school friends and her younger brother, Ashton, 4, Maci can walk, play and boss them around like any other six year old.
Last week, her parents, Lena Appleton, 30 and John Winters, 31, watched her take to the stage in the school nativity.
Her mother said: ‘Watching her we were so proud, but it did make us realise how big the other children were compared to Maci.
‘She was all smiles in the nativity and singing along to all the songs. She lit up the room and kept waving to us begging to have more pictures taken. To us, she’s our little Christmas angel.’
Although Maci’s mental capacity is the same as any other six-year-old, she’s well below the average weight and height for her age group.
Ms Appleton added; ‘When Maci was born we knew something was wrong. I was terrified when she had to be induced at 36 weeks.
Small: Maci (left) aged eight weeks next to a four-week-old baby (right). She suffers from a rare genetic condition called Russell-Silver syndrome
‘She weighed just 3lb 5oz and the doctors didn’t have a clue why she was so small.
‘I
took her home, but she didn’t gain any weight when I fed her – she was
too weak to suckle properly. The doctors told us she was a small baby
but she’d catch up eventually.’
As a toddler, Maci’s head grew so much bigger than her body that she wasn’t even able to lift it as she crawled along the living room carpet.
Ms Appleton and her partner John, a retail manager at a mobile phone shop, spent the next three years visiting geneticists and dietitians, desperate to know why their little girl wasn’t developing normally.
At the age of three, a referral to the genetics team at Doncaster Hospital finally brought a diagnosis – Russell-Silver Syndrome.
Russell-Silver Syndrome is a form of primordial dwarfism. It means that the body is smaller than it should be even before birth and those affected find it difficult to gain weight
Ms Appleton said: ‘We were terrified.
Maci only weighed 11lbs and it was scary watching her go through so
many tests. When they finally said that she’d tested positive for
Russell-Silver Syndrome we were so relieved – we could finally help
her.’
‘With her blonde hair, cheeky smile and gorgeous blue eyes, Maci loves doing the same things as any other schoolgirl.
‘She
has little steps to help with washing her hands and at home loves
nothing more than dressing up like a princess or writing mummy and daddy
notes saying “I love youâ€.
Despite being two years younger, Maci’s brother Ashton is taller
She added: ‘We still worry about the impact Russell-Silver Syndrome will have on Maci’s life – but she’s so confident and cheeky. She does get upset when people mention her size but now she’s old enough to tell them off which is quite funny.’
Unfortunately, passers-by and other children do comment on Maci’s pint-sized form – and it’s not always positive.
‘In the supermarket, people used to gather around our trolley and gawp,’ says Ms Appleton. ‘They’d ask “what’s wrong with her?â€
‘Then when Maci could walk they’d tell me off and say “your baby shouldn’t be walkingâ€.’Â
‘Everyone at Maci’s school is so
understanding, but sometimes we’ll go to play areas and other children
will call her a baby and tell her off for playing in there.’
But
her younger brother Ashton is already standing up for his older sister.
At 103cms, he already towers over her and their height difference makes
playing games even more fun.
Their mother said: ‘Maci does
get confused and asks why Ashton is taller, but he’s so protective of
his sister and he’ll always stick up for her.Â
‘She usually wins at hide and seek because she can fit into a little cupboard in the bedroom where he can’t find her.’
Despite
her specially adapted steps to reach things at school, Maci has had
very few problems. Because of her tiny fingers, she used to find
fastening buttons difficult – but can now put her school uniform on
herself.now she puts on her school uniform all by herself.
Tough: Despite being dwarfed by her school friends and her younger brother, Ashton, 4, Maci can walk, play and boss them around like any other six year old, says her mother Lena
Ms Appleton added: ‘When she first started school she kept getting knocked over because people would run past and not see her. But she has a ‘school buddy’ to look after her on the playground and the kids are brilliant.’
Maci is being treated with growth hormones to give her a bit more height and has recently had hearing aids fitted. She also finds walking long distances difficult and has a special purple wheelchair to help her along.
Common physical traits of those affected include a small, triangular-shaped face and a head which grows to be disproportionate to the rest of the body.
Her mother said: ‘There are adults with Russell-Silver Syndrome who have led normal lives and had children of their own. We have to be positive for Maci’s sake. When we look back at what she’s achieved it’s just incredible.’
WHAT IS RUSSELL-SILVER SYNDROME?
Russell-Silver syndrome is a growth disorder that causes slow growth both before and after birth.
Babies with the condition tend to have a low birth weight and often fail to grow and gain weight.
However, their heads grow at a normal rate meaning they often appear unusually large compared to the rest of the body.
Many children with Russell-Silver syndrome are thin and have a poor appetite.
The average height for a man with the condition is 4ft 11in and for a woman, 4ft 7ins.
Children with the syndrome often have a small, triangular face with a prominent forehead, narrow chin and small jaw.
These children are at an increased risk of learning disabilities.
The condition is thought to affect about one in every 100,000 babies.
It is most commonly caused by abnormalities in genes found in chromosome 7 and chromosome 11.
Source: Genetics Home Reference
or comment on this article
-
Old school: Suspended Phil on Duck Dynasty
-
GRAPHIC CONTENT: Moment dead Sperm Whale EXPLODES
-
VIDEO: Lion sent FLYING through the air before turning on…
-
Boy teaching his husky puppy to howl
-
Service dog mesmerised by Pluto.
-
Guitar legend Carlos Santana is reunited with his old…
-
Adorable pups are inseparable as one acts as guide dog for…
-
Duck commander Phil Robertson says homosexuals ‘invent ways…
-
Horses rescued from icy lake
-
Cute seal hops into duck hunters’ boat to get a cuddle
-
Warning graphic content: The bloody tradition of whale…
-
Researchers make micro-muscular breakthrough
-
EXCLUSIVE – Duck Dynasty’s Phil Robertson breaks his…
-
Emergency services have a busy night as ‘Mad Friday’…
-
‘I love you whoever you are’: Mother gives her husband’s new…
-
Three-year-old son whose father threw him off tower block…
-
‘Hung out to dry’: Duck Dynasty star and family lash back at…
-
Found: The secret of looking up to 40 years younger is…
-
Baby’s first picture: Breathtakingly intimate pictures…
-
What is the mysterious ‘unknown object’ blocking progress of…
-
Fights break out at shoe stores across the country as fans…
-
Hunt for mystery wealthy man who posed as beggar and…
-
Real estate agents sued for ‘using home they were supposed…
-
Pregnant nurse, 29, is FIRED after she refuses to have flu…
Comments (27)
what you think
-
Newest -
Oldest -
Best rated -
Worst rated
The comments below have been moderated in advance.
trixi1,
Yorks, United Kingdom,
1 hour ago
Another exaggeration DM, your headline says the size of a 2 year old yet she is only a couple of cms shorter than her brother who is 4!
Martha,
Leawood,
1 hour ago
Darling girl. I know she will be very loved throughout her life. What a beautiful smile!!
me,
Somewhere beneath the sun, United Kingdom,
1 hour ago
When i had my eldest daughter , full term she weighed 4lb, 12oz ., after a year of not growing well , i asked for her to be seen , at hosp , she had various tests , all came back normal ,I don’t know which they tested her for , b she was always way behind other children her age , now at 18 , 4ft 10 tall , she still is small , one thing i do know is it is Genetic as , there are quite a few female in my extended family who are all this small.
Direi,
Oxford,
1 hour ago
Still, she is beautifully proportionate and utterly adorable!
stokie,
stoke-on-Trent. UK,
1 hour ago
Hopefully now they have a diagnosis they will be able to help.
thog01274,
Leeds, United Kingdom,
1 hour ago
Adorable family , Maci is gorgeous especially in her Christmas outfit ,she is surrounded by love .
drbranch1956,
Long Beach,
1 hour ago
Maci, your smile speaks volumes! I’d say you are one tough little sweetheart of a girl, and will be able to take anything life throws your way! I, for one, wish you all the best as you grow up and turn into an amazing young woman. Prayers and thoughts with you!
Rich,
Glasgow,
1 hour ago
She might be “tiny†but what a giant smile she has..
flo,
London,
1 hour ago
She’s beautiful best wishes to her and her family!
petite,
Lagos, Nigeria,
1 hour ago
Cutie pie
The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline.
Find out now