In the quiet moments of life, we often take for granted the simplest joys—a child’s laughter, the ability to run, play, or jump without a care in the world. For most children, these are everyday activities, but for Iwan, these dreams have been stolen by Spinal Muscular Atrophy (SMA), a relentless disease that attacks the muscles, robbing him of his ability to move, breathe, and live a normal childhood.
The Heartbreaking Reality of SMA
At just a young age, Iwan’s life is defined by a fight for survival. SMA has left him unable to sit, stand, or walk on his own. Simple things, like holding a toy or playing with friends, are out of reach for Iwan. Instead of running around with his peers, his days are filled with pain, constant struggles for movement, and the pain of watching his body fail him.
From the moment Iwan was born, his family knew their lives would be a little different. However, no parent could ever anticipate the devastating toll that SMA would take on their child. Despite everything, Iwan’s parents have not wavered. They love him fiercely, fight for him endlessly, and never stop hoping for a brighter tomorrow.
A Battle of Pain and Resilience
As Iwan’s body weakened over the years, his family fought with everything they had to ensure he could have a life filled with love, warmth, and as much joy as possible. Unfortunately, life with SMA is unpredictable, and even the smallest steps forward often come with devastating setbacks. One such setback occurred recently when Iwan’s condition worsened to the point where he could no longer eat on his own due to muscle weakness.
In response, Iwan underwent surgery to insert a PEG (Percutaneous Endoscopic Gastrostomy) tube, a procedure meant to help him receive nutrition directly into his stomach. While this procedure was meant to help, it only led to more problems. The wound around the gastrostomy tube refused to heal and started bleeding, adding more pain to his already difficult journey.
Despite seeing doctors, using ointments, antibiotics, and steroids, the wound shows no sign of healing. Iwan’s parents have gone back to the hospital multiple times, seeking answers, but the road has been difficult and emotionally taxing.
A Glimmer of Hope Amidst the Darkness
Despite these overwhelming challenges, Iwan’s family has not lost hope. In a world filled with uncertainty, a small ray of light emerged: a potential treatment for SMA. This medication could stop the disease’s progression and possibly give Iwan the chance for a better future.
At the end of this month, Iwan is scheduled to be admitted to the neurology ward, where doctors will assess whether he qualifies for this groundbreaking treatment. If the medication is approved, Iwan will begin a new chapter in his battle—one filled with the possibility of rehabilitation and a future that could have been out of reach before.
But the challenges don’t stop with the medication. SMA patients, especially children, often require intensive rehabilitation to help them regain as much mobility and independence as possible. The costs of therapy, equipment, and rehabilitation are overwhelming. As Iwan continues to grow, he outgrows the tools and aids that help him function. Every step of progress comes at a significant financial cost, and without help, Iwan’s parents fear they won’t be able to provide the care their son so desperately needs.
The Power of Community Support
Iwan’s parents have always been determined to give their son the life he deserves. They are doing everything in their power to make sure he has access to the best treatments, therapies, and equipment available. But even with all their strength and love, they know they can’t do this alone.
That is why they are reaching out to the community, to you, for help. Iwan’s family has launched a fundraising campaign to help cover the astronomical costs of his medical care, including the treatment, rehabilitation, and specialized equipment he requires. The need is urgent, and every day that passes brings them closer to the deadline for treatment approval.
They say, “We can’t do this without you. Your help gives us the hope that we can save our son. Please, help us make sure that Iwan has a chance to live a full life.”
A Family’s Endless Love and Determination
Iwan’s fight is not just his own. It is the fight of his parents, his family, and a community of people who refuse to give up on this incredible child. Iwan’s strength, resilience, and unbreakable spirit are a testament to the power of love and determination. Despite the pain and uncertainty that define his life, Iwan’s family never stops hoping, fighting, and praying for his future.
They know that the road ahead will not be easy. But with each small victory—whether it’s a new treatment, a step forward in rehabilitation, or a smile from Iwan—they remain hopeful. They are determined to give their son the best chance at life, and they know that with the support of people like you, they can help Iwan achieve a future filled with love, laughter, and joy.
Please help Iwan’s family fight for his future. Every donation, every share, and every act of kindness will bring them one step closer to providing Iwan with the treatment he needs to live a fulfilling life. Together, we can make a difference. 💛
Iwan’s story is not just one of illness, but of the strength of a family that refuses to give up. With your help, they can continue the fight to ensure their son has the chance he deserves. Please, join us in supporting Iwan’s journey.
