Target of R 30 000 reached to help save life of a local baby
Ashley said the blood tests were taken on February 9 and confirmed that they have arrived in the USA.
Ashley and Slade Stanton from Illiondale have reached their R30 000 target to have baby Gracey’s blood tested in the United States of America.
In the December 2024 Bedfordview Edenvale News, it was reported that the young family needed the donations to save baby Gracey’s life.
Gracey was born on July 20 last year along with her triplet siblings, Sagan and Emryn.
Gracey and her sister Emryn were born sharing the same placenta and were diagnosed with unequal placenta sharing.
This meant that Gracey was half the size of Emryn.
ALSO READ: Help Illiondale family save their baby; Gracey
At just 11 days old, Gracey’s brother Sagan contracted a virus in the neo-natal ICU and died.
A decision was taken to move Gracey and Emryn to Unitas Hospital and at just four months old, Gracey underwent an MRI which confirmed a diagnosis of pontocerebellar hypoplasia (PCH).
PCH is a group of rare heterogeneous conditions characterised by prenatal development of an abnormally small cerebellum and brain stem, which is usually associated with profound psychomotor retardation.
Although the clinical features vary widely, PCH is usually associated with profound intellectual disability and delayed or absent psychomotor milestones.
In most cases, the disease is uniformly fatal early in life. The life span has ranged from death in the perinatal period to about 20 to 25 years.
Only a few individuals, usually patients with PCH type 2, survive to the second and third decades of life.
ALSO READ: Body of baby dumped next to bin on Edenvale street
The blood samples sent to the USA would confirm Gracey’s type of PCH and what longevity and care she would need going forward.
Ashley confirmed the blood samples were taken on February 9 after the family reached their fundraising target and sent them to the USA. She added that baby Gracey was at home on permanent oxygen.
“She is still being fed through a tube in her stomach, and due to her no swallowing reflex, she is being suctioned every few minutes, but she is with us and looking better,” said Ashley.
“We are nervously awaiting for the test results, which could take weeks,” she added.
“The test results will also indicate whether this is a genetic or vascular issue.”
Gracey has been in and out of the hospital with symptoms of PCH for several months.
“She was home for a short while before we had to rush her back to hospital with a severe fever and terrible coughing.
“She was in the pediatric ICU at Unitas Hospital with an infection found in her blood. She was on antibiotics and monitored closely. She has a fighting spirit,” added Ashley.
The couple said they were overwhelmed by the situation. “We are worried every day about what is going to happen to little Gracey.”
ALSO READ: Why breastfeeding is a mother’s gift for a baby
More recently, Ashley had to resign from her job because the couple did not have enough money for a full-time nurse for Gracey.
She said this has put the family in a difficult financial position.
“With Emryn, we are also doing our best to ensure that she reaches her milestones and gets the attention she needs.
“It has been difficult for us, as I had to go to the hospital every day to see Gracey and Slade has to stay home with Emryn and work at the same time,” added Ashley.
Mirelle Neto, Gracey’s grandmother, said while Emryn is healthy, she is premature.
“The girls are both six months old according to birth date but only three months as they should have been in the womb longer. This means that both of them need occupational therapy.
“Gracey will need it for a long time due to her issues with her brain. Gracey cannot smile or eat. She gets fed through a PEG tube from her stomach.
“She requires oxygen 24/7 and has to be suctioned all the time while she is awake as she cannot swallow her saliva. Her airway is a constant worry, and she needs nursing 24/7.
“Her consumables, formula, nursing, and therapy are costing a fortune, and medical aid does not cover everything,” said Neto.
She explained that since the birth of the triplets, the couple has been driving from Edenvale to Unitas every day to visit Gracey which cost a fortune in petrol.
“The couple is exhausted and have been through so much. Every cent donated helps them to cope and takes just a little more stress off them as they can buy her formula, tubes, oxygen and pay for therapy,” said Neto.
The family thanked the Modderfontein Golden Oldies Hockey Club for helping them and ASI for their contributions to Gracey.
“We are so grateful for what the community has done for us this far, with the beautiful messages, prayers, and donations.
“Gracey is such a special little angel who deserves so much out of life. She has fought every day since she was born, and she continues to fight to this day. She is a warrior.”
ALSO READ: How to know if your baby is too hot or too cold
The family is still pleading with the community for donations and prayers.
“We are asking the community to help give Gracey the best life we can give her if they feel led in any way to help. We are so grateful for our family, friends and community for coming together and helping us help our little girl.”
According to Neto, the family’s next challenge will be to pay for nursing because Gracey’s airway has to be monitored 24/7.
She said a nurse for three months will cost R36 000 and their medical aid will not provide further nursing assistance.
Residents and businesses who may have remote work for Ashley can email Mirelle.d.neto@gmail.com
For more information on how to assist the family, contact Neto on 082 561 4733.
Alternatively, residents can visit www.backabuddy.co.za and search for Slade and Ashley’s Triplet Journey.
