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Submitted by PatientsEngage on 22 July 2019
A woman in a yellow kurta standing with her young son in a white shirt in front of a shop window. Both wear spectacles.

Pallavi Mehta, 42 talks about the trials and triumphs of taking care of her 11 year old son Divyam who has Fragile X Syndrome, a genetic condition.

Please tell us a bit about your son’s condition

My son Divyam is 11 years old and is suffering from the Fragile X condition. Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. He was diagnosed when he was just a year old.

What were the early symptoms?

Delayed milestones, like head holding, walking,eating, sitting..All his milestones were delayed

Is there a history of Fragile X in your family?

No, no one known to his grandparents

Related Read: A Sister's Insights On Her Brother Who Has Fragile X and ADHD.

Please describe your experience of managing the condition for your son?

To describe it in words would be really difficult. To start with, he had a difficult birth, a pain induced normal delivery which took 24 hrs, I compared his milestone chart with his 3 years older sister. There was nothing to indicate him as being normal.

We took him to AIIMS where Dr. Madhulika Kabra, diagonsed him with an FX syndrome. Our world was shattered. We ran from pillar to post to get this reversed after which it took years for us to accept this eventuality.

Dr. I.C. Verma connected me to Shalini Kedia in 2010, who appeared in my life like a lifeline. She called me to Mumbai to attend a seminar and get introduced to the concept of “Early Intervention”. Five years down the line and with the unstinted support of people like Shalini and her associated parent group support , I managed to handle Divyam’s therapies in AmarJyoti, Karkardoma. An experienced Dr, Sehgal helped me and my husband with his EIP sessions (Early Intervention Programme) and taught us to become Divyam’s personal therapists. I don’t know what and what not I have achieved, but yes, today we are proud of Divyam.

What medications is he on?

No medication. The search is on for the right medication or treatment.

As carriers, do you and your daughter both face problems pertaining to the condition?

Till now, no

What were some of the challenges you faced in handling this condition in your son and what is your advice to patients who face similar challenges?

Fx screening should be made compulsory

What kind of specialists do you consult for your son and how often?

Earlier I used to consult doctors at AIIMS and Sir Ganga Ram, New Delhi, for Genetics

What are the least understood aspects of Fragile X?

People with Fragile X are really really loving people. They only want their surroundings to be happy, and they also want to act normally. They take time to search and pick things from their memory banks. But they are generally perfectionists by nature.

With proper educaton and therapy,  people with Fragile X are not burdens.

Have you had to make some changes to your lifestyle because of your son's condition?

Yes. Our world revolves only around him. The three of us are guided by him. It might sound awkward but we consider him super natural.

Has it been difficult emotionally for your son and for you to cope with his condition?

Sometimes, I really feel low, but he is the only one to say “Mumma aap naraaz ho….do not worry mein sab theek kar doonga” (Mummy I know you are upset. But don’t worry. I will put everything right). This kind of an assurance becomes our silver lining.

How has your family supported you?

My husband has been a great support. He never considered our son disabled. His positivity is really a driving force for all four of us to live a normal life.

Did you see a counselor for support?

In the initial stages,, Shalini was my only support, and of course Dr Kabra, Dr. Sapra and Dr. Madhumita (AIIMS)

What was the hardest part of the treatment? And what kept you going?

Divyam’s therapies were really difficult, he cried continuously

Is there a personal anecdote that you would like to share with us?

Divyam today is a good cook, he can prepare a dinner for us. Sounds unbelievable, but yes I used to make him sit with me on my kitchen slab and chat with him. He is a good and he has learned to cook. Once he has all the ingredients, he likes to cook on his own.He loves to manage the kitchen and keep his surroundings very tidy.

He actually loves to manage when assigned a duty. It is so important to believe in our children.