While the pandemic has no doubt been hard for everyone, for little Amera Dixon, the threat of Covid-19 has meant she’s had to shield inside over almost two years.
Seven-year-old Amera, who has Down Syndrome, is under the Government’s at risk category for coronavirus and has been since the beginning of the pandemic in March 2020 because of her disability.
The youngster also has a learning disability, autism, delayed development and low muscle tone.
Amera’s mum, 43-year-old Nicole from Sunderland, said that she realised her daughter had Down Syndrome from the moment she was born, but that just made her all the more unique.
“Amera was a planned caesarean section, because she had always been measuring small in the womb,” said Nicola.
“They couldn’t offer me the non-invasive Down Syndrome test whilst I was pregnant because the hospital had scheduled the 12 week scan too late, but we were made aware that Amera was likely to be born with some complications because it was noticed that her limbs were short in the later scans.
“The midwives and hospital staff kept a close eye on me during pregnancy for this reason.
“At 37 weeks I was having a routine scan when the sonographer spotted a issue with blood flow to the placenta.
“The doctor came in and asked me how I felt about having my baby at ‘3pm that afternoon’ so I told him I’d have to cancel lunch plans with my sister, but I would love nothing more than to meet my daughter that day.
“When they held Amera up to me after she was born, I turned to my husband and said ‘aw she has Down Syndrome, and she’s absolutely adorable.’ I just knew there and then, so it wasn’t a surprise when the medical staff confirmed it to us.”
Amera was born weighing just 5lb 5oz and spent a short time in the neonatal unit as she had trouble with feeding, but went on to leave Sunderland Royal Hospital ten days later.
Now a pupil at Sunningdale School, the city’s only specialist preschool and primary school for children with severe, profound and multiple learning difficulties, Amera has been unable to attend any of her classes since the country first went into lockdown in March.
This has meant that as well as missing out on socialising and learning, Amera has also not been able to access any of the specialist on-site equipment the school provides for its pupils.
Day-to-day essential equipment that Amera has at home includes: a care cot bed to keep her safe during the night, a specialised feeding chair which keeps her upright when eating as she has floppy airways, and a wheelchair as she is unable to walk independently due to her low muscle tone.
But one thing that Amera hasn’t been able to access since she’s been shielding is her regular hydro physiotherapy sessions, which she can only practise in water.
“When she was at school, she would attend weekly physiotherapy sessions in a specialised hydro physiotherapy hot tub. The water hugely helps with her mobility because it relaxes her muscles, so it’s pain free for her,” said Nicola.
“At school, her physiotherapist would create a specialised programme of exercises with her, which would also help Amera to build up her strength.”
Nicola said that she would also take Amera to practise hydro physiotherapist at The Alan Shearer Centre in Lemington on a regular basis, which provides specialised equipment, social facilities and respite for children and adults with complex disabilities and acute sensory impairments, including a hydrotherapy hot tub.
“Once we went into lockdown Amera lost all access to any kind of water physiotherapy, and even when everything opened back up up again, she had to remain shielded because she is high-risk,” said Nicola.
“My husband Gavin is really handy, so he adapted parts of the house into amazing safe play spaces for Amera while she’s been stuck indoors, but he obviously couldn’t conjure up a specialised hot tub, and the ones you can purchase start at around £5,000.”
This year, Nicola decided to reach out to the Chronicle Sunshine Fund, a charity which work tirelessly to purchase specialist equipment not available on the NHS, for local babies, children and teenagers with disabilities.
This year the fund have approved over £70,000 worth of equipment, the highest amount in the charity’s 100 year history.
The charity have since donated £5,000 towards Amera’s specialised hydrotherapy hot tub, which costs around £6,400 in total, and will arrive all the way from America in the New Year.
Both sets of Amera’s grandparents have generously agreed to loan the family the rest of the money towards bringing the hot tub home.
“We are so grateful to the Sunshine Fund and their support in helping Amera to get her own hot tub,” said Nicola. “For lots of people, a hot tub might seem like a luxury item, and not a necessity, but for Amera it’s hugely essential for her mobility.
“The work which the Sunshine Fund do for families like mine is incredible, and we feel very lucky that we have been supported by them through this difficult time.
“Amera’s physiotherapist is also thrilled on our behalf and has created us a new specialised programme of exercises, based off of what she was learning in school, which she can do at home once the tub arrives.”
Nicola said that she hopes that in the near future Amera could be able to receive the coronavirus vaccine, so she wouldn’t be forced to shield any longer, but she is currently waiting on further information from the Down Syndrome Association.
Bev Wright, Families Coordinator for the Sunshine Fund said: “We would nothing more than to continue helping families like Amera’s across the North East in the New Year and beyond.
“But there are still some children currently waiting for equipment and our parents are at breaking point and desperate to receive equipment that will ensure the safety, comfort and quality of life for their child.
“We can’t stress enough how much we need the North East to get behind us and donate what they can.”
If you would like to support children like Amera please consider making a donation to The Sunshine Fund here.
You can make a donation via text: Text Sunshine 2, 5 or 10 to 70085 to make a one-off donation of £2, £5 or £10.
Donations can also be make via cheque and posted to us: The Chronicle Sunshine Fund, 2nd floor, Eldon Court, ncjMedia Ltd, Percy St, Newcastle upon Tyne NE1 7JB