SEOBLOGREEN - Shelley Mlan is tired. She is an 11-year-old girl's mother. The girl's name is Missy. Missy has a very rare genetic condition. It affects her breathing. It affects her digestion. It affects her movement. Every single day is a battle. Missy needs round-the-clock care. Her life depends on it.
This is not a story about a medical miracle. This is a story about a mother's will. It is a story about funding cuts. It is a story about the National Health Service (NHS). The NHS once provided nighttime care. This support helped Shelley. It gave her a few hours of sleep. It was a lifeline.
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Then the local NHS body made a decision. They said Missy no longer needed it. They cut the funding. They withdrew the care package. Shelley's world crumbled. She is now on her own. She watches her daughter every single night. She is afraid to close her eyes.
The Invisible War: Caring for a Child with Rare Illness
Missy's condition is a heavy burden. It requires complex equipment. She has a tracheostomy tube. That is a breathing tube in her throat. She has a gastrostomy. That is a feeding tube in her stomach. She also has a jejunostomy. This is another feeding tube for her bowel. Managing these is a full-time job. It is a constant, exhausting vigil.
Shelley is a dedicated nurse. She is also a mother. She is also a sole caregiver. She handles all the medical procedures herself. She changes the tubes. She monitors Missy's breathing. She worries about infections. The financial strain is also crushing. The emotional toll is immense. "Every day is a worry," Shelley says. "Every night is a fear."
The Nightmare of NHS Discretion
The NHS saved Missy's life. Shelley is clear about that. She is grateful to the doctors. She is grateful to the nurses. Her issue is with the policy. It is with the bureaucracy. A panel of strangers decided on her family's fate. They said the support was unnecessary. They did this without living a single day in her shoes.
Shelley argues this is short-sighted. It is not cost-effective. Lack of care puts Missy at greater risk. A crisis means an emergency hospital admission. Hospital stays are far more expensive. They are also traumatic for Missy. This cut is just shifting the cost. It is also shifting the burden. It is putting the full weight onto one tired mother.
The Urgency of Awareness: A Public Plea
Shelley has taken her fight public. She is urging awareness. She wants people to understand. Rare diseases are common when counted together. They affect millions of lives. But individually, they are often forgotten. Their funding is the first to be cut.
She is not asking for special treatment. She is asking for basic human support. She is asking for a small amount of care. It would allow her to rest. It would allow her to function. A rested mother is a better caregiver. A better caregiver means a safer child.
The public response has been overwhelming. People are donating. People are protesting. They see the injustice clearly. They understand the human cost. This is about more than money. It is about dignity. It is about a little girl's future. It is about a mother's sanity.
Beyond London: A National Issue
Shelley's battle is a microcosm. It is happening all over the UK. Families with rare disease children are struggling. They face similar funding challenges. They fight constant battles for resources. The system is failing them. It expects too much from them.
Shelley wants reform. She wants mandatory rare disease planning. She wants consistent care funding. It should not be a postcode lottery. It should be a right. Her voice is now amplified. She is a symbol of resilience. She is the face of a desperate fight. Missy is her world. That is why she keeps fighting. She will not stop until her daughter is safe. And until the system finally listens.
Source: bbc.co.uk
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