Messages from families

From Sue Harris – Family llason – Rare CareUK

My son has a chronic illness so rare that it is sometimes referred to as an orphan disease.

The main problem with this is that it can be virtually impossible to find the right medical , and emotional support that can alleviate the feelings of isolation & distress for  those Caring for the sufferer.

Very often parents turn to each other for advice out of desperation.

This was my experience over the six years that my son went undiagnosed and even after.

Once he was finally diagnosed, the feelings of relief was soon followed by anxiety ..  What if there are no available treatments ? and the fear of the limited life expectancy of your child, plus the  quality of his life…

I was informed by the hospital that there was an expert in America that looks after all the patients with my sons disease, leaving no option but to follow her instructions.

I was also made aware of a researcher in New York that had set up a lab just working solely on natural supplements to improve the quality of life for those .

Now I, with outher parents found themselves with the dilemma of who to follow.

Many being  scared to stop medications to take  the natural route

There are many other forms of support needed alongside caring for a sick family member ….. Including ;

  • Benefit entitlements
  • Help from carers
  • The fight for funding
  • Specialized equipment
  • Physiotherapy
  • Occupational therapy
  • Speech therapy
  • School transport
  • Support teachers

Long hospital stays including the impact it has on other family members  mainly siblings that are missing out on a NORMAL LIFE!!!

All these are the daily struggles that families are enduring without help from an advocate.

I would describe having a child with a chronic condition is like booking a flight to the place of your choice and landing somewhere completely different….

adapting  to an alien environment

Feelings  of sadness & guilt yet somehow the most rewarding when milestones are met.

A roller coaster ride.

Not knowing what the future will bring.

It puts life into perspective.

Something  people take for granted.

If your child has a good day it’s a gift you want to bottle up and cherish forever.

Children  that have a chronic condition teach us a lessons in life.

They are truly an inspiration.

As are the parents who devout their  lives to just keeping them alive & healthy within there power whatever that takes ….

We will never give up the fight.

 

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