aidan-h

Our Pal - Aidan H

  • Born: 02/12/2010
  • Illness: No Diagnosis
  • Status: Current
  • Home Page:

Contact Details

C/O 15 Lawns Drive

Leeds
West Yorkshire
LS12 5RJ
United Kingdom


Email Pal


NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Other Information

  • Parents/Guardians - Sara and Dave
  • Interests - Aidan loves Power Rangers, Toy Story, Minions and Lego. He also loves balloons and Paw Patrol
  • Favourite Colour - Orange
  • Able to read? - No, but he is slowly learning!
  • Able to use hands? - Yes, though due to his Ehlers Danlos Syndrome fine motor skills can be tricky.
  • Visually/hearing impaired? - No
  • Suffers from any developmental delay? - No

Siblings - aged 3 to 16 wishing to receive post

  • Rhiannon 15/05/2006aidan-h
    • Interests:
      Loves lego, Rugby League, pink and anything to do with rabbits and Harry Potter
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About - Aidan H


Story written 2016

Since he was born, Aidan has been in and out of hospital with regular chest infections and viruses which really knock him for six. He now has a portacath and goes into hospital for two weeks every three months for IV antibiotics to be put through his portacath to try and keep him well. He is also fed through a gastrostomy after it was found he had an unsafe swallow.

As yet, we do not have a full diagnosis which explains Aidan condition. It is believed he has an undiagnosed genetic condition. We do know he has Ehlers-Danlos Syndrome which makes fine motor things such as writing quite difficult. He has to use special pens to help him write. He has recently started to enjoy Lego which has been really good at developing his fine motor skills.

Due to the number and frequency of his infections and viruses it is thought he has an issue with his immune system. He goes into hospital for a day every three weeks to have an infusion of immunoglobulin to try and boost his system.

Despite all this, Aidan is a happy chappy and nobody who meets him ever forgets him!

Update 1st May 2017

Aidan can now eat, he has been doing relatively ok. He has restarted hydrotherapy for a month, which he absolutely loves. He has also had another swallow test to see if he can start drinking but unfortunately he failed this. As a result, he has ended the month with a chest infection. While he is feeling unwell with it, he is not allowing it to stop him and so far we have managed to keep him out of hospital. Once again, your letters and parcels have been a big highlight of another generally difficult month within the family. Each and every one received bring huge smiles to the faces of both children.

Update 2nd March 2017

Tough start to this month with Mummy in hospital. Aidan is doing quite well though. He has had a chest infection but for once we managed with just treatment at home. We have now also been able to progress from purees to some normal foods and he is loving it! We have yet to find something he doesn’t like!

Rhiannon has also found out this month that she will need her 6th ENT surgery, but we have yet to receive a date for that.

Your letters and cards continue to be a great source of joy and comfort to both children, so thank you.

Update 4th January 2017

Both children received so much Post in December! Aidan had both Christmas and his birthday to celebrate! Lots now coming up in the coming months for both of them. Lots of tests and a couple of new therapies. Thank you so much Post Pals for your continued smiles.

Update 4th November 2016

Good month overall for Aidan. Kicked off with a great weekend at Chessington!! It was great to spend time with other kids and parents who understand just how difficult it can be when your child is unwell, especially when it comes to chronic conditions. Thank you Post Pals. His infusions continue. We are still trying to persevere in getting him eating orally. This is proving to be very slow going though. Rhiannon has had extra referrals added to her list. November is going to be busy as we have lots of appointments, meetings and an admission for Aidan. We are hopeful that all this will give us a bit more direction overall in terms of treatment and care for both of the children.

Update 2nd October 2016

Nice quiet month for Aidan really. A couple of hospital reviews and back to school! The latter is wearing him out but we are monitoring this. Both Aidan and Rhiannon love receiving post and will sit together to open any that comes. It’s just about the only time they aren’t arguing! Thank you all.

Update 5th September 2016

August has been a fairly quiet month for Aidan. Still had a few appointments, but no real big ones! He has remained fairly stable health wise. One or two small blips but they have been handled without the need for admission! However, we have noticed a drop in his energy levels with fatigue kicking in much quicker than before. He does have a new wheelchair coming following a reassessment, so hopefully this will give him back some independence. Now counting down the days until the return to school.

Update 7th August 2016

While not 100% well, Aidan is currently in a reasonable spell for him, but is still having problems with moving forward in terms of eating. We do have a couple of big appointments coming up in the next month or so, which we hope will help give us some answers moving forward. Aidan is still loving receiving his post and we have to read them over and over to him!

Update 7th July 2016

Aidan started the month in hospital having IV antibiotics. While there he received his brilliant Minion balloon, which is still going strong! He has also had a difficult month with gastrostomy problems and is in pain.

Both Aidan and his sister received lots of lovely cards and letters as well as a few gifts so many, many thanks. They both love receiving post.

Update 2nd June 2016

Aidan is finishing the month back in hospital for his planned IV antibiotics. He has actually done pretty well this time, and even though he was starting to be unwell as he came in,  he wasn’t as poorly as he has been at this stage in the past. He is still loving receiving things from Post Pals so thank you all.

Sibling Rhiannon has also had a couple of appointments and will also now start to receive some of the support she needs.

Update 2nd April 2016

Aidan started the month in hospital, finishing off some IV antibiotics. He then had to go back into hospital for a gastrostomy change. We had a couple of fairly good weeks but he has ended the month with another chest infection. So far, we have avoided admission and have everything crossed, so we can manage at home. The post he has received in his first month as a Pal has been amazing and certainly put smiles on the faces of both him and Rhiannon. Thank you!

Update 3rd March 2016

February has been a very busy month for Aidan. The most exciting thing for him was being accepted as a PAL! He spent the last two weeks of the month in hospital for his antibiotics. This was a very difficult admission with lots happening. One good thing to come out of it was that he had a swallow test. As a result we can now start introducing tastes. This is the first step in a long journey to eating again. We look forward to seeing what March will bring!