A LOVING mother & NHS worker has spoken about her incredible toddler who has “irreversible brain damage” and the “invaluable” therapy he has undergone.
Sally Knights, 32, from Colchester, is a clinical nurse specialist in the Gynaecology department at Colchester Hospital.
Sally and husband Adam Knights, a music and IT college teacher, are parents to 17-month-year-old toddler Henry, who was born on March 3 last year.
During Mrs Knights’ labour with Henry, there were “prolonged complications” which meant that his brain was starved of oxygen for an unknown amount of time.
After being born, he required resuscitation to get his heart beating again, and because of the lack of oxygen, brain damage called Hypoxic-ischemic-encephalopathy (HIE) was caused.
Only a few hours into his life, Henry had a 72 hour cooling therapy at Addenbrookes Hospital to avoid further damage to the brain.
As first-time parents this period of time was an extremely “terrifying” moment for Sally and Adam, given Henry’s condition of HIE it made it difficult to know what the future would hold for him.
Henry has cerebral palsy, developmental delay, evolving epilepsy and feeing problems – walking, crawling and rolling are very difficult for him.
He is supported by his parents everyday to reach the gross-motor milestones that typical children reach with no issues.
After Henry was discharged from Addenbrookes Hospital’s NICU after one week last year, he wasn’t expected to live very long.
That was the moment when his parents were introduced to East Anglia's Children's Hospices (EACH), an organisation which provides lifelong care and services to both bereaved and non-bereaved families.
According to its website, EACH’s aim is to “ensure the best possible quality of life for babies, children, and young people”.
The team at EACH’s centre, The Treehouse, in Ipswich, Suffolk, welcomed Henry, Sally and Adam “with open arms.”
The family then spent three weeks and even celebrated Mother’s Day last year at The Treehouse.
Miraculously, things took a turn for the better and Henry was allowed home at 24 days old.
Thankfully, despite all the enormous and life-threatening hardships and adversities Henry has faced, against all odds, Henry is living life to the fullest as best he can.
Sally said: “Henry is now 17 months old and is the light of our lives.
“He is brilliant, he is so full of smiles, cheeky, and wonderful to be around, it’s easy to see what an incredible little boy he is.
“Everyone who knows of Henry, loves him.
“It's only in recent months that Henry has been able to make eye contact, become more aware of his surroundings, smile that gorgeous smile and he's become wonderfully vocal.
“After a very challenging 17 months, Henry is blossoming into his own, he marches to the beat of his own drum, and we are in awe of him.”
Thanks to EACH’s dedication, the family were invited back for regular physiotherapy sessions to help Henry as he continues his journey after the hospice.
Specifically, Henry started Hydrotherapy sessions in June 2023, and he still has them today.
Hydrotherapy is a form of physiotherapy which takes place in water and each user has their own tailored sessions adjusted to their needs.
The sessions mean that Henry not only gets to enjoy being in a state of buoyancy with warm water around him, but he can also improve muscle tone, strength, and a range of motions for his joints and limbs.
Sally has praised the team at Each and the use of physiotherapy.
She said: “No matter what he has been battling with in his day-to-day life, these sessions provide him a safe place to relax and explore what his body can do.
“The physiotherapist at Treehouse is a wonderful person for Henry to spend time with.
“Hydrotherapy, physiotherapy, occupational therapy, speech and language therapy are a regular part of Henry's life and continue to help him reach his potential, whatever that may be.”
Inspired by her son’s unwavering spirit and the organisation’s positive work, Sally, her mother-in-law Alison, and aunt, will be taking on an adrenaline-inducing feat for EACH on September 28.
The trio will fall from a height of 13,000 feet in a skydive to raise funds for EACH and Sally’s ready for it.
She said: “People have asked if I'm scared but in all honesty, nothing will ever compare to the fear and despair I felt during Henry's first week of life.
“It will be an honour to jump out of a plane for him and in turn, the hospice that has gone above and beyond for us to feel like a family from the very beginning.
“EACH are an integral part of families like mine and the work they carry out is vital, I would urge everyone to donate what they can.”
To donate, head to justgiving.com/page/alison-knights-1719161766124.
To find out more about EACH, visit each.org.uk/
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