Mikaeels journey of hope

Hi, my name is Amina. My 4-year-old grandson, Mikaeel, has been diagnosed with a rare life-limiting genetic disease known as Hunters Syndrome (MPS type ll)

Hunters Syndrome is a devastating disease where the body does not have enough of the enzyme that helps break down certain complex molecules. Without enough, the molecules build up in harmful amounts, eventually causing permanent, progressive damage affecting appearance, mental development, organ function and physical abilities. In the UK, there are only around 60 people with this devastating disease. In Bradford, it appears Mikaeel is the only one. We are devastated as a family and want to reach out to create awareness and gain support. Mikaeel is under the care of the Manchester children's hospital, where he has been undergoing surgery. He will soon be making weekly visits to start enzyme replacement therapy to help prolong his life. Over the last two years, his pain and suffering have proven very upsetting for his siblings to see their brother upset. It has been difficult for mum alone to provide quality time and routine for them. Mikaeels's needs are so great that he requires round-the-clock care from mum. Therefore, his older two siblings stay with grandpa and me so that we can provide a good routine and stability for them.

The family are under considerable financial stress due to the costs of living rise, travel costs for medical appointments and providing specialist care and equipment. They have also been served an eviction notice on their current rented property as landlord is selling the property, leaving them essentially homeless. As the council have no properties available, especially adapted housing that mikaeel so desperately requires, it adds further stress on the situation as they have nowhere suitable to live. The siblings are separated whilst they wait to be rehoused. We would like to relieve the financial stress at least so that the family can focus on making memories at this important time. Any donations will be used to firstly, fund a deposit for a suitable vehicle as the bigger cars require higher deposits. Any further donations will be used to help with travel costs for mikaeels care in manchester, adaptations and specialist equipment that he requires.

Your kind donations will help tremendously so that Mikaeel and his three siblings can go out together in a comfortable, adapted vehicle and also visit Martin House, which will soon be able to offer respite for Mikaeel and his family.

Mikaeel's mother, Sabah, has created an Instagram page: 'mikaeelsjourney' where she, myself and his family would love you to follow him.

https://instagram.com/mikaeelsjourney

He is our little soldier who battles on despite his pain.

Your support and financial donations would greatly appreciate helping Mikaeel and his family.

Many thanks for taking the time to read my pledge for help.

Amina Khan