The parents of a baby named Robyn, who was born very tiny at just 11 ounces (328 grams), have finally brought her home after 18 months in the hospital.
Robyn was born five months early in March 2023 at Grange Hospital in Cwmbran, Torfaen, and she still needs special care all the time. Her parents, Chantelle (34) and Daniel (38) from Malpas, Newport, are raising money for her treatment. Chantelle said, “It’s like a dream come true to have Robyn home.”
Robyn was born at just 23 weeks and 2 days and was so tiny that she could fit in the palm of a hand. To keep her organs warm while she grew, she was kept in a sandwich bag.
After six months in the hospital, she spent another seven months in the pediatric intensive care unit at Noah’s Ark Children’s Hospital in Cardiff. She then returned to Grange Hospital until she was finally discharged in September.
Chantelle, who works part-time as an accountant, said, “It’s just so nice to do normal family things… and just all be together under one roof.”
Daniel, a self-employed bricklayer, mentioned that it’s much less chaotic at home now. He has had to cut back on work to focus on taking care of his daughter.
Robyn gets oxygen and nutrition through tubes in her nose and mouth, and her vital signs are watched all the time. She takes 30 doses of medication each day.
Her mom, Chantelle, explained, “She can’t cough, so we have to suction her mouth and nose throughout the day when she needs it.”
Daniel described Robyn as doing well and enjoying the “peace” of being at home. He added that they do a lot of physical therapy and play with her to help her senses.
Chantelle said it was tough to bond with Robyn in the busy hospital ward, with doctors and nurses always coming in and out.
“All you can do is sit next to her and watch,” she explained, “keeping an eye on the numbers on the screen and hoping she will be okay.”
“When Robyn was born, we weren’t sure if she would survive.
“As time went on, she grew bigger and stronger, but she still faced many problems. It became clear that her brain damage would have a big impact on her.”
‘We know nothing is impossible’
“We didn’t learn about her brain damage until about six months after she was born,” Daniel said.
“You have all these plans for how life will be, and then everything changes,” he added.
“But we try to stay positive.
“We know that nothing is impossible for Robyn because she has been told so many times that she wouldn’t be able to do things or even survive, but she keeps proving everyone wrong.
“She’s full of surprises, and I believe she will create her own story.”
Meet Twins with the Rare Benjamin Button Syndrome, Who Became Symbols of Resilience
In a small Brazilian town, there resides an extraordinary duo of identical twins named Elis and Eloá. Their story serves as a beacon of resilience and the remarkable power of the human spirit. Afflicted with Hutchinson-Gilford Progeria Syndrome, a rare and fatal genetic disorder causing accelerated aging, these twins confront their adversities with remarkable grace and strength, earning admiration from people worldwide.
Understanding Hutchinson-Gilford Progeria syndrome
HGPS stands as an exceptionally rare disorder, impacting roughly 1 in 20 million newborns globally. Marked by rapid aging from early childhood, individuals with progeria often display growth delays, diminished body fat and hair, prematurely aged skin, joint stiffness, and severe cardiovascular issues. Typically, those with HGPS have an average life expectancy of about 14.5 years, though some may extend into their late teens or early twenties. This syndrome gained public attention through the film The Curious Case of Benjamin Button.
The condition is caused by a mutation in the LMNA gene, which produces the lamin A protein responsible for maintaining the structural integrity of the cell nucleus. The mutation results in the production of an abnormal version of the protein, called progerin, which causes cells to become unstable and die prematurely.
Elis and Eloá’s journey
Elis and Eloá swiftly captured attention because of their distinctive medical condition. Despite the physical hurdles imposed by progeria, their contagious smiles and steadfast optimism have emerged as beacons of hope and inspiration. Guilherme and Elismar, the twins’ parents, have dedicated their lives to offering the utmost care for their daughters, striving to ensure they experience as normal a life as feasible within the confines of their condition.
The family’s path has been far from easy. Their daily life is filled with demanding medical routines, including physiotherapy, aimed at addressing joint stiffness and preserving mobility. Despite these challenges, Elis and Eloá approach each day with remarkable bravery and an unparalleled enthusiasm for life, which is truly remarkable.
A global community of support
Elis and Eloá’s narrative has touched hearts worldwide, sparking a surge of solidarity from individuals and groups committed to promoting awareness about progeria and backing research endeavors. The Progeria Research Foundation, a pivotal entity in this realm, has played a vital role in propelling research forward and furnishing assistance to families grappling with the condition.
Through social media platforms, the twins’ journey is shared with a broad audience, fostering a sense of community and solidarity. Their family’s updates, documenting both the highs and lows of their daily lives, provide invaluable insights into the realities of living with progeria, while also spreading a message of hope and perseverance.
Advances in research and hope for the future
In recent years, there have been remarkable advancements in comprehending and addressing progeria. A notable milestone occurred in 2020 when the U.S. Food and Drug Administration (FDA) granted approval for the first progeria treatment: lonafarnib. This medication has demonstrated efficacy in prolonging the lives of children with progeria by mitigating the accumulation of progerin in cells, thereby decelerating the disease’s advancement.
Though a cure remains elusive, ongoing research presents promising prospects. Scientists are delving into gene-editing methodologies, like CRISPR, as potential means to rectify the genetic mutation at its root. For families such as Elis and Eloá’s, these breakthroughs offer a ray of hope for the future.
And in our other article, we recounted the remarkable story of a girl born without a nose, affectionately dubbed “Voldemort,” who refuses to let her differences define her.
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