Since Vera turned 5 last month, she has been into hugging with a vengeance.
Her grip is tenacious. It's almost a strangle, and we have to pry her hands apart with some force.
To think Vera has lived to this day to give me the longest, tightest hugs I've ever gotten in my life. She won't ever learn to speak, but she sure has learnt to love.
"A simple child, that lightly draws its breath, and feels its life in every limb, What should it know of death?" - William Wordsworth
In a Nutshell
Vera was born small at full-term via elective Caesarean at 1.9kg. She was diagnosed shortly after with a rare genetic disorder - Trisomy 18. This feisty girl is among the rare 10%of T18 infants who survive beyond their first birthday. Despite her medical issues, she continues to defy her death-sentence diagnosis. She enriches our lives, just by being alive. Vera is 100% tube-fed and requires biPAP machine support during sleep. She can identify the people who love her by name and responds happily to a request for a hug.
What is Trisomy 18?
A rare genetic disorder that occurs in 1 out of 3000 live births. Of the 50% of babies who make it to birth, 95% do not make it past their first year. Those who do areconsidered survivors. Despite severe mental, physical and speech development delays and various medical issues, learning is possible to varying degrees for these children. They respond to loved ones non-verbally and are miracles of life in their own right.
1. Vera was born with a large PDA (13mm) which wasn't expected to close. It became a small one at 3 months and closed on its own at 6 months.
2. At birth, scans showed a duplex kidney and cyst. Subsequent scans showed kidneys to be normal.
3. Vera was born with hazy corneas, a film covering both eyes. They have cleared significantly on their own, and her sight has improved.
4. Vera is expected to "fail to thrive". Fed on the PEG, she is currently overweight on the Trisomy 18 growth chart.
5. Vera has littlehearing in her left ear, and moderate hearing in her right ear. She enjoys music, singing and listening to people talking.
6. Vera has Obstructive Sleep Apnea. With respiratory support from a biPAP machine, it is being managed.
7. Vera has seizures (myoclonic jerks). With seizure medication, it is being managed.
THIS TRISOMY 18 GIRL CAN
1. Sit tripod 2. Roll from back to tummy and shuffle backwards 3. Track a person walking across the room 4. Grin when tickled or when told a funny story 5. Recognize familiar songs and smile 6. Clap hands when happy 7. Grip Ark Probe and 'brush' her teeth 8. Pull to standing from sitting (with assistance) 9. Turn towards a voice calling her 10. Kick in the air and cross her legs 11. Pat your face when you carry her 12. Pull up to sitting by gripping our fingers.
13. Take a few steps forward with body support
At 4 years
- Vocalise "laughter" at people who are funny
- Pull your neck in and give you a neck hug
At 5 years
- Kick both legs vigorous while being carried
- Pull herself up from lying to sitting position using own hands and core muscles
At 6 years
- Grasp a tambourine and hold for quite a while and shake it - Hold a face towel with both hands and bite it continuously for 10 minutes
At 7 years
- Execute the command "Hug mummy/daddy" - Identify loved ones by name
Puckachu Chu Chu Porky Vera Piglet Little girl Funny girl Little Piggy Vera Our little friend Friendy Good job girl Lonely Moanly Lazy Daisy Smelly Nelly
Saliva Girl
OUR SUPPORTERS
Across the miles
Life is Life
"Life is an opportunity, benefit from it. Life is beauty, admire it. Life is bliss, taste it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it."
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