Hi All,

This is Finley.

In early 2023 Finley came down with what was initially diagnosed as a chest infection and given steroids to treat it. Ongoing symptoms and an apparent allergic reaction that caused his face to swell meant that his GP sent him for numerous tests at Peterborough City Hospital.

On 24th April 2023 after a 10 day stay in hospital he was diagnosed with Nephrotic syndrome and Finley's journey began.

Nephrotic syndrome is a collection of symptoms due to kidney damage which may include protein in the urine, low blood albumin levels, high blood lipids, retention of fluids and associated swelling, weight gain, feeling tired, and many others. Nephrotic Syndrome is extremely complicated as it differs from one patient to the next and it effects roughly 2 children in every 100,000.

Treatment of nephrotic syndrome can be symptomatic or can directly address the injuries caused to the kidney. The objective of this treatment is to treat the imbalances brought about by the illness and ultimately bring about periods of remission.

Treatment that Finley received was initially unsuccessful and as a result Finley underwent a kidney biopsy in June 2023 at Nottingham QMC and a clearer diagnosis of FRNS (frequently recurring nephrotic syndrome) was made and Finley had to go onto permament dosage of steroids to manage his condition.

Since his diagnosis, Finley has been required to attend weekly, sometimes twice weekly hospital appointments to have blood tests, manage medications and has been admitted to hospital 15 times for relapses and reoccurrences of symptoms with stays lasting between 4 - 14 days.

During these relapses Finley has also had to have 2 CT scans which identified absent seizures which is common in nephrotic syndrome and particularly with the medications required.

To date, Finley has been on 4 different Nephrotic medications to try and control his nephrotic syndrome but unfortunatley these have all been unsuccessful. In addition to the Nephrotic specific medications, he has also had to have a variety of other medications (diuretics, gastro protection, daily steriods) to help reduce the protein levels and albumin transfusions to help reboot his kidneys into working on their own but unfortunately these have still led to relapses and the cycle starting again.

The variety of medication that Finley is required to take mean that he now has a suppressed immune system and as such he picks up bugs, colds, chest infections and other illness very quickly.

As noted, Finley has been given a number of medications targeted at symptoms and imbalances but unfortunately these have not been fully successful and Finley is now about to face another new course of medication and the family face more uncertain times.

Whilst this wonderful little lad faces his battle with a huge smile on his face and a big thumbs up, his illness has had a huge impact on his family with his mum having to take significant time off from work to look after Finley during the planned appointments and during the relapses or secondary illnesses and his dad having to juggle his time between work, travel to hospital, and looking after Finley's brothers. Paired with this time away from work, travel costs, costs of hospital stays etc. have started to take there toll and with another direction of treatment that is likely to require travel to and from Nottingham for more specialist care, the next part of Finley's journey is likely to be more difficult still. Finley's condition is likely to mean that eventually the family will be able to get some sort of financial aid if he is classified as having a disability, but the process for applying and gaining this aid is slow and not guaranteed so I am starting this fundraising page to ask anyone that can to give a little to cover some of these extra costs whilst this little lad continues with his brave battle.

Thanks All.