Shewley Parvin

Funding for Musa's New Room with Adaptations.

Fundraising for Sullivan's Heroes
raised of £10,000 target
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Funding For Musa's New Room with Adaptations
Sullivan's Heroes

Verified by JustGiving

RCN 1163021
We provide grants, support and fundraising to adapt the homes of UK disabled children


Musa's Journey: Help Us Build a Safe Haven

Dear friends and compassionate supporters,

We would like to introduce you to Musa a brave and resilient six-year-old boy who has captured our hearts with his unwavering strength. Musa is part of a set of twins, and as we witnessed their growth side by side, we couldn't help but notice a significant discrepancy in their developmental milestones. While his twin effortlessly achieved each milestone, Musa encountered challenges in lifting his head and communicating effectively. Filled with concern, we sought medical guidance, only to receive a heart-wrenching diagnosis: Musa has been diagnosed with Beta Propeller Protein Associated Neurodegeneration (BPAN), a rare genetic condition that progressively worsens over time.

Musa's journey has been marked by significant challenges. He is immobile and confined to a wheelchair, with limited control over his head and neck. Over the years, his ability to use his arms and legs has declined, and he now faces the additional burden of progressive scoliosis, a curvature of his spine. Musa also has an unsafe swallow, requiring PEGJ feeding, a tube that delivers food directly to his stomach. His oral and airway control has diminished, necessitating frequent suctioning to maintain his airway clearance and safety.

Recently, Musa's health has changed, making him more susceptible to chest infections. Sadly, this has resulted in multiple hospital admissions within a single year. To complicate matters further, Musa now requires oxygen support during sleep and naps, further highlighting the severity of his condition. Managing his seizures has become an ongoing challenge, demanding constant monitoring and medication adjustments.

The daily care Musa requires is both physically and emotionally demanding. Simple tasks like bathing and changing his diapers must be performed in bed and require the assistance of two people. Currently, a temporary ramp connects his home to the outside world, constructed by our selves. However, this makeshift solution severely limits his mobility and independence, preventing him from experiencing the joys of outdoor activities.

We are reaching out to you, our compassionate community, in the hope of creating a safe and nurturing space for Musa. Our goal is to build a specially designed room on the ground floor with direct accessibility via a ramp. This dedicated space will feature a fully equipped wet room, allowing Musa to enjoy proper showers and personal care with ease and dignity.

To enhance Musa's comfort and facilitate his care, we aim to install an inbuilt hoist system within the room. This system will enable seamless and comfortable transfers for changing, bathing, and moving him between equipment. Furthermore, a specialised hospital bed will be provided, ensuring Musa can sleep soundly and minimise the risk of developing painful bedsores.

However, we cannot achieve this ambitious goal without your support. The cost of constructing Musa's safe haven, complete with the necessary equipment and modifications, is substantial. We kindly request your generous contributions to help bring this project to fruition and provide Musa with the care and environment he so desperately needs.

Your donations will directly impact Musa's life, providing him with comfort, mobility and dignity. Together, we can ensure that Musa's day-to-day challenges are alleviated, allowing him to thrive in a space designed to cater to his unique needs.

Join us on Musa's journey and be a part of the transformational impact your support can make. Every contribution, no matter the size, will bring us closer to our goal.

About the charity

Sullivan's Heroes

Verified by JustGiving

RCN 1163021
Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity. Please support us, to build brighter futures for disabled children.

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