Hello, my name is Mousumi Sahoo. The most amazing little boy Saisaksham is my nephew. We welcomed him to this world on September 11,2019. He is now almost 4.5 years old.

When we were blessed with Saisaksham, bringing him home lightened our house and heart.

Unfortunately, he had numerous health issues which popped up after first year of life. Our hearts were racing higher with fear and pain. We are doing everything possible for our boy's health. Sometimes it is really painful for us to see our child undergo harsh treatments. Our heart is in pain, but we need to stay strong for our boy. We believe that every life is precious and valuable and we want to give our baby every chance to grow up, learn and experience all the joys of life.

After his first birthday we received the news of most earth-shattering diagnosis of Mucopolysaccharidosis Type 1 or Hurler Syndrome. MPS 1H is an extremely rare, progressive genetic disease in which the body is missing an enzyme needed to break down long chains of sugar molecules. These chains of molecules are called glycosaminoglycans (formerly mucopolysaccharides). As a result, the molecules build up in different parts of the body and cause various health problems impacting organs such as the heart, spleen, liver, muscles, connective tissues, joints, and the central nervous system causing severe functional impairment. Without treatment, life expectancy for an individual with Hurler syndrome is less than 10 years.

There is no cure for MPS 1H, but treatments such as bone marrow transplantation (BMT) and/or enzyme replacement therapy (ERT) can help make MPS1 a more manageable disease.

We explored about enzyme replacement therapy but it's quite expensive and a life long process of continuous treatment and admission to hospital.

As suggested by some group of doctors from Narayana Hospital Bengaluru, the only hope is for a bone marrow transplant. Bone marrow of Saisaksham's parents match to only 50%, as a result of this we need a donor for a full match. All this will require Saksham's father to take leave of absence for an indefinite amount of time, may be around 4-5 months to support Saisaksham's treatment.

As you can imagine, there are many associated costs with a life-saving treatment, so we want to personally thank everyone ahead of time for any contributions. Until now we have already spent a huge amount on his treatment. Any contribution no matter big or small is appreciated and will be of immense help to us.

Please donate and help us share this link with maximum number of people so that more people can extend help at this rough moment. Thank you for your time and support.

Your donation will give our little boy a chance for a healthy and happy life-something every child deserves.

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