Kacper Tomczuk My Dream To Walk again

Hello.Kacper has been born prematurly as a tiny little baby from 33 weeks of pregnancy.He just gets 2 Apghar points by his birth.He struggled to breath and weight only 1.250grams.He spent 5 weeks in hospital in Intensive Care.Months after months his development was delayed and when he turned 15months been refered to MRI head scan and chromosomal genetic tests.Results came and it was absolutly terryfieing.Kacper  results came as a rare genetic disorder called MECP2 Duplication Syndrome.I've been shocked that only about 300houndreds children live in this condition all over the world.And not many of them here in UK.I was trying to find out whats Kacpers prognosis are and  how can I help him in his life.I grave but gets strenght and started to belive that he can have a chance to live in his maximum potencial and I Can make his life happy no matter If he is having this rare devastating condition.He is 10Years old now.He is having global developmental delay,intelectual disability,severe constipation,incontinence,leg discrepancy,mild scoliosis,low nuscle tone.Risk of progressive spasticy.He is non verbal.He vocalise,raising his voice to express his needs.He is having frequent chest infections.He has been hospitalised last year due to lung infections.Usually when summer was coming he had difficulties to cope with his oxygen levels especially when there was a hot summer.He then been admitted to hospital requireing an oxygen.This condition is with limited life expectancy.Those with severe stage of condition wont live more than 25Years old.Kacper is fully dependant from adult support on his care;managing his changing clothes ,pads,bathing,feeding,dispensing medication,helping in walking,changing position during night.I have to carry him up and down by the stairs.As he cannot manage them.In 2021 he has been diagnosed with Tonic clonic sizures.Medication for over a year has been unsuccsessfull.Kacper had sizures sometimes 4times a night.At school,in the park,being in the car,or while when he was fed.This was extremely sad for me as this was unpreditable.Epilepsy took his ability to stand,keep balance,and walk for short distance.He is now fully dependant on his wheelchair.I had to lift his arms to help him to walk,but even that he walk on bend knees.He is very unsteady on his feets.He cannot stand unsupported.In his condition a physiotherapy is extremely beneficial and the only cure to help those children keep alive.As long They will be having a various forms of treatment the more They will stay healthy and mobile.We would like to raise money for Kacper's physiotherapy,hypoterapy,neuro speech and language therapy and other forms of physiotherapy if necessary.This therapies are essential they will help him being healthy and wont place him on pneumonia if he will be left with no therapies as he is now fully dependand on his wheelchair.I dream and my gratest wish is to see him walking or maybe running in the future.Im dreaming but dreams can come to be true.We and Kacper will be very very gratefull for even small donations.As every child he deserves a chance to have a bit happier life.Let's all make It difference.Thank You every and each of You for taking part in Our/Kacper's yourney❤

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.