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“He is my first son, born after we had 4 daughters. We had rejoiced at his birth, but only days later his condition surfaced, and since then, he has been going through hell. He had difficulty walking, and would cry in pain when we gave him a bath. Summers are especially terrible, because the heat causes him unbearable pain. If we had the money for his treatment, he wouldn’t need to suffer at all anymore…” - Majibar’s mother26-year-old Majibar has been suffering from a rare skin condition that has wreaked havoc on his life. Diagnosed with skin ichthyosis, resulting in thick fish-scale-like patches across the skin, he is in dire need of treatment to overcome this condition. He is also a grappling with exposure keratitis, which causes damage to the cornea in the eye due to dryness from the inability of the eyelids to close completely, leading to loss of the tear film.
His skin started to crack only days after he was born
Majibar was born as healthy as any normal baby. But only seven days later, cracks started appearing across the expanse of his skin, covering his body from head to toe. He had to be hospitalized for a week, and the doctors also gave him medicines, but it wasn’t sufficient to treat the condition.“This condition made him extremely prone to getting skin infections. I can’t even count the amount of times he’s suffered with them because they were so frequent. It was just so painful to see him like that… He only managed to walk when he was about 10 years old. Now, he has learned to do most things on his own, but he still struggles at times, and I can’t bear to see him like this.” - Majibar’s mother
This skin condition has left him with a loss of eyesight in one eye.
This condition has made it difficult for him to walk, or do any other work. The skin on his feet cracks up and bleeds whenever he tries to walk, and its especially worse during winters and summers. Besides this, he also cannot see from one eye and has trouble seeing from the other one.“He has to depend on medicines and eyedrops to see, or else his eyes will stop functioning. It’s something he fears as well - he’s terrified of what will happen if he loses his vision completely. I can’t let that happen. I want him to have his eyesight for as long as he lives.” - Majibar’s mother
Life has certainly not been kind to him, and neither has society
What’s worse is that Majibar is no stranger to the maltreatment and nasty remarks of society. Because of his appearance, he has been the victim of body shaming and is oftentimes left questioning the reason for this happening to him."While there are some people who treat me well, there are a lot of people who say mean things about me as well. I feel bad and often wonder why I’m having to go through this. Others do not have to deal with such problems. Why me? The fact that I am unable to work also makes me feel very bad. Even children are afraid of me because of how I look, and hence, I do not go out. I usually sit by myself, fighting back my tears and wondering why I have to suffer like this." - Majibar
He needs multidisciplinary care and lifelong treatment, but has no way to afford it
Majibar’s attending doctor has suggested a medical plan for the 26-year-old, which entails genetic evaluation, topical treatment, ongoing skin care and vision evaluation. Along with this, he needs multidisciplinary care and lifelong treatment. The total cost for this treatment, including overhead costs, is approximately Rs 50 lakhs, something that Majibar and his family cannot bear."I want to undergo treatment and get better. Over the years, many doctors had advised us to seek treatment in cities like Siliguri, Kolkata and also Vellore. But it was not possible since my father is a farmer and earns enough to meet only our food requirements. We just do not have the financial capacity to afford my treatment." - Majibar tearfully
Majibar and many others can once again dream of starting a new life if he gets the treatment and he needs your help so that they too can live a life that every human being on this planet deserves.
If they do not get treated within a specific period of time, their quality of life suffers, and eventually, they face the risk of death. Funds stand between them and their healthy, bright futures. You can help avoid these complications, by donating to Milaap Rare Disease Fund, which will ensure that no person suffering from rare diseases is left behind.
Charity No : 319201431163
Click here to learn more about how you can make a difference.
