Aiza Cheema

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My name is Aiza. I have been diagnosed with an irreversible brain injury. My little story so far is as follows:

I am now 2 years and 6 months old. I was born with a heart condition on 07th August 2020. At 2 weeks old I had a 'stent' inserted to keep my little heart working till the planned open-heart surgery. This was to be done when I was 6 months old. Pulmonary Atresia with Intact ventricular Septum, Tricuspid atresia, Hypoplastic right heart syndrome, sever Mitral valve leak. 

In baby terms the right side of my heart is small, the important valves which flow blood to my heart and lungs were underdeveloped and a leaky door which was unable to keep the blood moving. I had low saturation levels, always blue and had seizures due to lack of oxygen.

After spending 2 months at home with my mummy and daddy waiting for my first open heart surgery I had a major collapse in November 2020 and I was very poorly. I spent nearly 2 month's on life support at the Intensive Care Unit at Leeds General Infirmary. The team, mummy, daddy and everyone involved did everything they could to help save my little life. I finally made it through. This wasn’t without multiple injurie’s and came home in February 2021.

Due to the collapse there was a major depletion in oxygen to my lungs, liver and kidneys leading to a total shutdown and injury. Alongside this my brain was also impacted which the doctors diagnosed as a Hypoxic brain Injury. I am now very delayed developed unable understand or do things most babies at my age can but try my best to do what I can.

The injury to my little head and my already weak heart lead to verylow oxygen levels of 70 and I was poorly a lot. I spent numerous weeks in hospital on numerous occasions. The doctors gave me lots of medication. Some nice some not so. Lots of scans, appointments, blood tests, difficult meetings, NG (Nasogastric tube) feeds and  sleepless nights. My mummy tried her best with all the medication I need to have. Some of the names are really long and hard to remember but with the help of everyone involved she did a great job!

The lifesaving heart surgery was now delayed till I was strongenough for it to happen. This meant for my lung, liver, kidneys to recover and the doctors to wait and see the full impact of the irreversible brain injury so they could balance the risk of going ahead with the huge heart surgery which I urgently needed.

After a very difficult 2 years the heart surgery finally happened on 27/01/2023 at Leeds General Infirmary. Though it was the biggest day of my little life so far, the surgeons doctors and nurses did an AMAZING job. (Super Glenn, Mitral Valve repair, Recruitment of right side of heart) A very complex open-heart surgery, over 8 hours in theatre with huge risks involved. Not forgetting if anything went wrong, further injury to my brain. I am now 7 weeks out from surgery. My heart is happier, I am no longer blue and I breathe better. My next planned surgery will be when I am bigger and stronger. Life expectancy 12 years with further intervention required to extend.

With a heavy heart the surgeon advised we know how to fixmy heart, but we can’t do anything about my brain injury. I can only try my best and with your help get access to important life changing physio therapy and feeding therapy for now. This will help me and my low muscle tone, joints and brain activity to learn how to balance, reach, grab, sit and play. With the feeding therapy this will allow me to chew, swallow, and help me eat all my mummy’s yummy food.

I am very delayed developed due to the hypoxic brain injury. This has impacted parts of my brain which would help me function as a normal child would. I can’t get up or sit, stand or balance. Despite getting heavier I have to be carried and handled a lot. Giving me the chance to get lots of hugs 😊 I can’t swallow/chew all the tasty food, but it helps if its mushy 😊 I am yet to start talking/understanding/ learning/developing but I am always smiling and giggle lots with my friends at my special nursery. 

I ask you to please help me so my mummy and daddy can help get me the support I need. I am still small so my brain will try developing despite having the irreversible brain injury. I will try my best. My mummy and daddy do get tired lots but as a team we do everything we can 100%. We have made it this far and with your support go even further. 

The funding is to go towards intense physiotherapy costingaround £7500.00 and the Specialised feeding therapy which is around £5000.00. We have spent countless hours researching and after many conversations picked (Manchester physio). Once we have the funds secured the therapy can be booked and we can show all your helpful people how the journey goes.

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