Help a Mom Be With Her Baby Boy For His Remaining Days

Hi, my name is Krista and I am fundraising for my lifelong friend, Rae Manness (aka Ash Cooney) . It would mean so much to me if you are able to take the time to read this and if you can support by donating or sharing. Her baby boy, Jackson is in the hospital, and they are preparing her for his End of Life. We don’t yet know if he has days or weeks left, but I am fundraising with the goal that she is able to spend as much time as possible by his side, giving him all the cuddles and love in the world he deserves, while he is still here. I am really hoping we can make this happen for her, and her sweet little boy who needs his mama now more than ever.

Jackson James Glugosh is almost 1 yo. He was born August 13, 2023. Right from birth, there were complications. He had a brain bleed and had to be placed on a ventilator. He developed hydrocephalus due to this, and underwent surgery to put in a shunt to alleviate the pressure on his brain. He also had to have a feeding tube put in, meaning Ashley was never able to nurse her baby. Jackson spent his first few months on earth in the NICU.

On October 28 2023, Jackson was finally discharged and able to go home for the very first time. Ashley was very dedicated in ensuring he was fed and medicated on a very strict schedule. Unfortunately, his time at home was brief, and he ended up back in the NICU a few months later.

In spring 2024, Ashley finally learned what Jackson’s medical issues were from. He was diagnosed with an extremely rare genetic disease, called X-linked myotubular myopathy.

Here is a brief synopsis of the disease :

(information taken from: https://www.childrenshospital.org/conditions/x-linked-myotubular-myopathy#:~:text=Boys%20with%20severe%20MTM%20may,disease%20and%20live%20into%20adulthood.)

X-linked myotubular myopathy (XLMTM or MTM) is caused by a genetic mutation on the X chromosome, a rare disease that causes muscle weakness. It occurs almost exclusively in males, affecting about 1 in 50,000 newborn boys worldwide. The muscle weakness can also affect bone development, head and face shape, and eye movement. Boys with severe MTM may survive only into early childhood. Infants with severe myotubular myopathy are very weak from birth and appear limp or “floppy.” They often have difficulty feeding and breathing on their own because of weakness in the muscles used to suck, swallow, and breathe. The breathing difficulties may be severe enough to require breathing assistance at night or 24-hour mechanical ventilation.

As mentioned above, Jackson does need to remain on a ventilator. His healthcare needs included administration of medications, suctioning secretions as needed, feeds done via gastronomy tube with the use of a mic-key and gravity bag. Frequently visiting doctors/specialists and the SSCY center feeding clinic and physiotherapy.

Ashley is trying her best to be at the hospital as often as possible, however that creates a huge amount of financial stress, as she cannot work full time due to being at the hospital with her son. There is also the added costs of all the transportation to go to the hospital so often, as well as care for her two other children. It would be absolutely amazing if she could solely focus on being there for her baby, instead of having to spend time away from him by being at her work, and being unable to spend their last moments together. It would also alleviate the immense amount of stress and pressure of how to pay the bills during this already extremely difficult time. She is doing her best but is really struggling to keep afloat and is behind on many bills. Unfortunately her water heater recently stopped working as well.

Ashley is one of the most dedicated mothers I have ever seen. She just lights up any time she talks about her kids. She does everything in her power to give them the best life possible. Unfortunately this whole situation is absolutely devastating and heartbreaking, and she is really struggling, especially with the fact that there is nothing she can do to save her son. All she wants is to be able to enjoy every moment she has with her little guy while she still can and love him up as much as possible.

She has told me that Jackson has taught her more about herself than anyone else ever has. He’s truly made a big impact on her and I really want him to have every moment possible with her before it’s too late.

Please help this mama and her baby be together for all of his remaining time. Every dollar helps and every share helps. I truly appreciate you all taking the time to read this and hope we are able to achieve our goal to support Ashley in being with her child.

She will also need funds to cover the costs of his burial and funeral when the time comes, so that’s why I have set the goal where it is.

Ashley is also a lifelong Transcona resident, and College Pierre Elliott Trudeau & Murdock McKay alum, so please share amongst anyone who may know her as well.

Thank you so so so so so so incredibly much.

I will update as often as I can.

Krista Blahut