Giveaway #2 – Helping a young mum’s terminally ill daughter

By September 6, 2021October 17th, 2021No Comments

Congratulations ALL.
Tonight you have made a lovely young woman and her terminally ill daughter feel very loved.

This nomination came in from our member Sue Griffin (some detail withheld):

Dear Friends of Derby 500 Club.I would like to make a nomination for a recipient of Derby 500 fund. This family is known to me, initially through my work at YMCA Derbyshire with Jessicas Mum being a Social Work student on placement there.

Jessica is in her early 20s, she lives in Derby and has a young daughter, Amera, who in August 2020 received a devastating diagnosis of Niemann Pick Disease. NPD is extremely rare, only a few cases worldwide, it is life limiting and currently incurable.NPD affects the body’s ability to metabolize fat (cholesterol), it is currently affecting Amera’s liver, kidneys and brain. She is growing increasingly weak and uses a walking frame or a wheelchair as the disorder affects her balance and mobility.

She was recently hospitalised due to a severe seizure, she is also going through the planning and procedures to have a peg fitted to assist her digestion, to try to get her to gain and maintain weight.Jessica has worked tirelessly to raise the profile and funds for NPD in a desperate attempt to support finding a cure.

She works so hard to fill Ameras days with positive experiences to create happy memories. Jessica is currently in the process of moving house, to a local authority purpose built property with a lift to enable Amera independent access to all areas of the house.

Jessica has a bucket list for Amera, including, sensory toys, to help stimulate and calm her and for days out, creating memories and enabling Amera to pack as much into her life while she can.

Due to the house move Amera will need new furnishings for her bedroom (Jessica also needs to kit out the whole house to ensure its safe for Amera).

Jessica would love to take Amera to the North Pole to see Santa this year, provided she is well enough.If Friends of Derby 500 Club were able to support Jessica and Amera they would be able to help provide stimulating toys, create a special memory or assist with the practical support of the house move, either way relieving a little pressure and create a little pleasure in these increasingly difficult times.

When I spoke to Jessica this evening she was delighted and immediately grateful for our £500, later she messaged saying, “thank you so much to all the kind individuals that chose to support my daughter, it really is heartwarming, completely took me by surprise. We are due to move house next week and I’m going to reach out to Amera’s OT to see if there’s anything further which would fulfill her needs and treat her”.

Jessica has a page on facebook called Mimi & NPD to raise awareness of the condition, and she has already posted a thank you to our lovely group on there. Please have a look and a ‘like’.