Story
Jessica was born April 2021 during COVID-19 with a rare disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD), to which there is no known cure. Due to COVID mum was told without dad present that Jessica wouldn‘t live beyond her 4th day, thankfully she‘s still here fighting. Jessica‘s only option is to have a kidney transplant after her 2nd birthday; we just need to get her there. This disease has had a detrimental effect on Jessica‘s health. Jessica has spent a considerable amount of time in hospital at LGI - Leeds Children’s Hospital, Ward 50 (Renal/Liver Specialist); and whilst on the ward the family has been torn apart and has struggled tremendously. Jessica‘s brother James (8yr) also finds it very confusing and difficult to understand. The family has had first hand experience about the impact hospital life can have on parents all whilst having to care 24/7 for a very sick child - it‘s emotionally, physically and mentally draining.
Due to mum, being in the Army we are based too far away for family to offer much support. With no other local support in place, both parents have had to time a considerable amount of time off work, which has placed a massive strain on the family.
Therefore we would like to take this opportunity to achieve the following:
1. To raise awareness of ARPKD in children
2. To raise funds to help Jessica
3.To help support patients at LGI Ward 50
ARPKD - what is it? ARPKD is a rare disease that affects the kidneys and liver. It is usually diagnosed in babies and young children and occurs in roughly one in every 20,000 live births. ARPKD causes cysts – sacs filled with fluid – to develop in the small tubes of the kidneys. ARPKD also causes problems with the liver, including the formation of cysts, scar tissue (called fibrosis), and a swollen bile duct. Although ARPKD affects the kidneys and liver, the immediate risk to about a third of babies born with the disease is lung under-development. This can make it difficult for your baby to breathe and requiring breathing support from a machine. Over time, ARPKD causes damage to the kidneys, stopping them working properly, and eventually leading to kidney failure. A normal healthy baby kidney is around 3.5-4.2cm when born, Jessica‘s kidney’s were 8.9cm and 9.2cm and haven‘t stopped growing. With this growth her heart, lungs, stomach, intestine and bowels are all immediately effected. Jessica is on 13 medications multiple times a day. 5 of these alone are to help lower her blood pressure. Jessica is on a continuous drip feed through her gastronomy (PEG) as her stomach and Intestines are so squashed they can’t perform their normal function. Jessica is 18months now and cannot crawl, walk or talk. She doesn’t eat and is restricted on how much she can drink. This disease really is horrible and very hard all around.
Jessica was very poorly from Aug - Oct 22 with multiple stays in York hospital due to high temperatures, conjuctivitis, sub-conjuctival haemorrhage (due to high BP) breathing difficulties, infections in her PEG and viral infections. Jessica was exhausted and later admitted to Leeds LGI Ward 50 due to concerns. Later we found out Jessicas had caught Bronchitis. That same day we was told Jessica was scheduled for her bilateral nephrectomy on 23rd Oct but due to her being exhausted and struggling to breath and that the kidneys were restricting her lungs capacity the operation was cancelled. Whilst admitted Jessica went for an abdominal ultrasound and the findings were shocking; Jessica's kidneys were least 16cm for the left and 20cm for the right and will continue to grow (normal size 6-7cm for a 1-5year old). With this disease Jessica's Liver has also been effected and she now a liver consultant.
Jessicas operation has now been scheduled for 21st Nov with 3 weeks od shielding prior to help reduced exposure as much as possible.
We have had many people ask how they can best help but we was unsure how best to use that help; after many suggestions for crowdfunding we feel this would be the best way to help.
We really appreciate any and all help and thank you so very much!!
