News
‘Our baby wasn’t expected to live – she’ll soon be enjoying her second Christmas.’
18 Dec 2024
A Maidstone father has pledged to run 500km ahead of his daughter’s forthcoming second birthday to raise fund for vital therapies.
Krysia Szadkowski, who will be two in January, was not expected to live after being diagnosed with alobar holoprosencephaly during the early stages of her mother Katarzyna Monko’s pregnancy.
In spite of being advised to terminate the pregnancy, the couple took the heartbreaking decision not to, holding on to hope that Krysia’s short life could benefit others through organ donation.
Against the odds her condition showed signs of improvement and when she was born, she outwardly appeared healthy. However she lives with syntelencephaly which leaves her almost unable to move or to sit unsupported. This has also led to plagiocephaly (a misshapen skull). Krysia was also profoundly deaf, but thanks to hearing implants received earlier this year at the Evelina Hospital, is now able to hear.
‘Krysia is only offered 1.5 hours of physiotherapy on the NHS, which is clearly not enough.’
‘I have spent hours researching therapies and have seen real improvement in Krysia’s balance after some physical therapies we have paid for privately, including Vojta therapy, Conductive Education Therapy and Dynamic Movement Intervention Therapy.’
‘But these are very expensive and Krysia will need regular sessions for many years, which I why we have launched a fundraising campaign.’
‘Krysia loves games like peekaboo and she is clearly frustrated at not being able to move. She has already beaten the odds – the right therapy could drastically improve her quality of life. Who knows how far she could go?’
Dad Kamil Szadkowski, 42, a sales executive, is running 500km between Nov 26 and Jan 26 – Krysia’s birthday. He said: ‘I’m running 10km every day before work, it’s a small thing I can do for Krysia who has been through so much.’
‘I invited Sir Mo Farah to run with me – sadly he is too busy, but his office sent me some signed photos so I’m planning to auction those too.’
‘We have three older children who have no particular health issues so this is the first time we have dealt with anything like this and no one give you a manual – it’s a question of working it out as we go along.’
Krysia’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children and teenagers like Krysia with healthcare needs which cannot be provided by the NHS and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
‘We wish Krysia and her family all the best with their fundraising activities, we are pleased to be supporting them to give them the support in reaching their fundraising goals.’
CEO
To find out more about Krysia or to donate, visit https://www.treeofhope.org.uk/ways-to-give/childrens-campaigns/krystyna-szadkowska/
To follow Kamil’s progress or bid for the photos, visit https://www.facebook.com/profile.php?id=61550251886924
