Ashley and Slade Stanton from Illiondale have shared an update on their daughter Gracey’s health journey.
In March, the Kempton Express reported that the young family reached their donation target of R30 000 to have Gracey’s blood tested in the USA.
The results, received on April 30, showed that Gracey’s Pulmonary Capillary Hemangiomatosis (PCH) was not genetic, but rather caused by unequal placenta sharing during pregnancy.
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“These results do not really give us much of an indication of anything, but on the positive side, this also means that genetics is not standing in the way of Gracey’s future.
“We were slightly relieved that it was not genetic as that means that if we ever decide to have more children, we do not have to fear that this will happen again,” said Ashley.
Gracey and her twin sister celebrated their first birthday on July 20.
Ashely said they continued to face challenges with Gracey, as she had to be rushed to the hospital at the beginning of April with a collapsed right lung.
“Due to Gracey getting older, her secretions were over-producing and her lungs got tired. Gracey had to be ventilated,” said Ashley.
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“The doctors then decided a tracheostomy would be Gracey’s best chance. Slade and I were worried but knew we needed to accept this decision to give Gracey the best life.”
According to Ashley, Dr De Santos from Unitas performed the tracheostomy, which led to Gracey being admitted to the hospital for a month.
“The sisters in PICU trained me to change it and look after the trachy. As scary and complicated as it was, I can confidently say that I am a qualified medical mom now.”
“With having the trachy in, comes with its risks and her chances of infection are a lot higher. We have also seen a huge improvement in Gracey’s well-being,” added Ashley.
She said Gracey oxygenates well now and was a completely different baby.
“She started smiling and playing more. She does not look so stressed anymore.
“A neurologist at Morningside Hospital diagnosed her with cerebral palsy on top of her PCH.”
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“Emryn, Gracey’s sister, went for her one-year check-up.
“We were concerned about Emryn as she is so behind on her milestones for her age. Her doctor then also diagnosed her with Cerebral Palsy.
“As heartbroken as I was, I did not want this to define her and we are doing our best to motivate her medical aid to assist us with occupational and physiotherapy.”
Ashley said they have an incredible therapist at Therapy Worx in Bedfordview to help our little girls.
“It has been an extremely overwhelming time trying to juggle everything, making sure both girls get the therapy they need.
“It has become really difficult for me to find work to bring in another income and it is hard on Slade trying to help me and also trying to work to bring in income,” said Ashley.
“Discovery has been amazing but unfortunately they cannot pay for everything.
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“We are asking the community to help us fund therapy where medical aid cannot, consumables for Gracey and her trachy and feed consumables for Gracey,” added Ashley.
She said the Golden Oldies Hockey Club has been helping them with nursing but cannot promise they will have enough funding after September.
“If we could ask for donations towards nursing for Gracey, as this allows us to know Gracey is being taken care of while I look for work and take Emryn to therapy.
“Due to us having a small car, we cannot take both the girls at the same time.
“Gracey takes over the whole car with her oxygen and suction and has to be monitored by someone in the back, not allowing space for another car seat.
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“We continue to pray for a miracle for both Gracey and Emryn. We managed to make it this far with the generosity of our incredible family, friends, and community. We are extremely grateful for the love and support that we get,” added Ashley.
“We do not have a BackaBuddy campaign at this stage but if anyone would like to help, they can contact me.”
Residents who can assist the family contact 079 720 6065.
