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I would like to introduce my amazingly brave little girl Lydia. She is 2 & has been through so much already in her short life.
Lydia was born at 36 weeks & was 4lbs 4ounces. She was small but strong! When Lydia was 3 days old she had her first operation!
Lydia is now 2 and has already had 10 operations in her life! She has two lifelong conditions – microcephaly & short bowel. She is fed intravenously 16 hours a day through a Hickman line in her chest. Our little girl is getting big now and our home will soon be incompatible with her needs. She is unable to walk and is wheelchair bound. We want to give Lydia all she deserves. We need to alter our home to meet Lydia’s growing needs. We are looking to raise £20,000 towards a house extension and equipment. Every penny raised will help change Lydia’s future.
Thank you for your support. For Lydia’s full story see below x
Lydia's full journey
Lydia was born at 36 weeks & was 4lbs 4ounces. She was small but strong! She was taken to special care to be looked over and make sure she was ready to come home. She was perfect and we were overwhelmed we our new baby girl. However, this is where our story begins. On the 7th January 2016 at 3 days old Lydia had her first major operation. Lydia struggled to fed and had small green vomits. An x-ray was taken & showed Lydia had a blocked bowel.
We put our trust in the surgeons and handed over our newly born baby girl. The operation was long but Lydia did so well. The doctors believed Lydia had cystic fibrosis as her bowel was blocked in the small bowel. Lydia was paralysed for 3 days after her first operation so she could heal. It was so hard not to be able to cuddle my new born baby, all I wanted to do was take it all away. Lydia recovered well and we began to give her small amounts of my milk, however after a few days it was clear to see her bowel was still blocked. Lydia was sick a lot and couldn’t fed at all.
This is when we were told about TPN (total parental nutrition). This is a liquid food that has everything your body needs to grow and survive. It is pumped through your bloodstream and you are then able to survive without eating or drinking. However, it is very bad for the rest of your body as the rest of your organs take on extra work that they were not designed to do. There was nothing we could do but allow the doctors to put lines in our tiny baby. Lydia was attached to a machine 24hours a day. Lydia had to have daily bloods taken to make sure the TPN was giving everything she needed. I didn’t want to leave her side as every time I went away I thought she would need me. She needed to be cannulated most days and by 3 weeks old they struggled to find a vein because all her little veins were used a bruised. So, at this point the surgeons were called in again. They needed to see why Lydia was still not eating and insert a Hickman line (a line that goes into one of your main arteries). We were exhausted but knew Lydia needed help.so once again Lydia went into surgery. This operation was very long and when she was brought back to us she didn’t even look like our baby anymore. She was so tried and pale. Lydia struggled to recover from the second operation it took almost a week before the doctors un paralysed her to see if she could try and breath by herself. But she did it! She bounced back again and we were so proud. The Hickman line was used daily for the TPN and we didn’t need to hear or see our daughter in pain daily trying to be cannulated.
Our story goes on and on but with so much to tell I though id bullet point them next few months,
· Lydia couldn’t feed after the second operation as needed a bag on 24/7 to drain her stomach.
· It was discovered that Lydia had a small hole in her heart that needed to be investigated.
· Lydia was tested over and over for cystic fibrosis and it was discovered she didn’t have it. So, we are still unclear why her bowel was blocked when born.
· Lydia wasn’t developing like she should have so an MRI scan was done and it showed Lydia was born with microcephaly (small head). This is one of Lydia’s main medical conditions.
· Lydia’s sight was tested and we have been advised she id partially sighted. This is most likely in connection with her microcephaly but know one can give us a reason why.
· Lydia was referred to genetic testing to see if they could understand why she was born with so many complications. But unfortunately to this day we don’t have an answer.
· Lydia was taken for a third bowel operation a month after the second as she still wasn’t able to eat. This operation changed Lydia’s life. The surgeons made the decision to remove the majority of Lydia’s small bowel. This meant that she would need to remain on TPN for many years to come as wouldn’t have enough small bowel to absorb nutrition.
We stayed in hospital with Lydia for almost 8 months. Both myself and Lydia’s daddy (Mark) wee trained on everything she needed and the hospital finally allowed us to bring Lydia home. It was such an amazing but scary time for all of us. Lydia needed a lot of care so I gave us my job and became a full-time mummy/carer for Lydia.
Since being home Lydia has had to return to hospital for care just 7 times.
1. Possible line infection (sepsis) – IV antibiotics
2. New Hickman line – surgery
3. Insertion of a PEG (gastrostomy)
4. Forth operation on her bowel - successfully unblocking Lydia’s bowel!!!!
5. Possible line infection (sepsis) – IV antibiotics
6. Possible line infection (sepsis) – IV antibiotics
7. Peg turned into button
Thank you for helping our family!!!
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Oct 6, 2018
Sep 24, 2018
Hi Lou, just seen this page. Great idea. Love our little girl who I now can’t hardly pick up!!! Keep going.....keep strong xxx
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